Self-management – we know it’s one of the things that can most improve the lives of people living with pain, but all too often it’s not being put into practice successfully.
After speaking to people with pain and healthcare professionals, we’ve been able to put together a clearer picture of what is going wrong and how we might make things better.
Click here for the main Breaking Barriers page.
Call 0300 323 9966 or 07548 229 958 to book a place at one of our sessions in Alexandria, Clydebank, Easterhouse, Pollokshields or Possilpark. We’re expanding to venues throughout Glasgow. Watch this space…
What is the Pain Education Session?
The pain education session is for anyone who has had pain for more than 12 weeks. The session will give you a better understanding of your pain to help you manage your condition more effectively in the long term.
What does it involve?
How will it help me?
The session is an introduction to help you develop a way of dealing with your pain and should allow you to:
Who will be there?
A trainer, who has chronic pain themselves, a volunteer and a small group of patients who have long-term pain.
How long does it last?
The session is 2 hours long with a short break in the middle.
Where does it take place?
At various venues around the Greater Glasgow and Clyde area. Please call us to find your nearest venue.
What do you need to do now?
Bookings and attendance are free of charge. For more information or to book a place for a Pain Education Session please phone 0300 323 9966 or text 07548 229 958 for a call back.
Greetings. We at Pain Concern hope that the contact you had with our helpline was informational and supportive. To help us monitor and improve this service, please provide answers to the following questions. Your answers will be stored anonymously. Thank you for completing this form. The information collected is important for helping us raise the funding necessary to continue operating this helpline.
FREE NHS-funded classes for people with persistent pain in parts of Hertfordshire (Hatfield, Letchworth, Watford and Hemel Hempstead) starting September.
Learn ways to help manage distressing medical symptoms for people with persistent IBS, fibromyalgia, ME, chronic fatigue and pain that have no obvious medical explanation.
Using breath work, gentle movement, visualisation, discussion and creative expression the course aims to:
• increase wellbeing, reduce low feelings and/or stress
• explore effective ways to manage symptoms
• recognise unhelpful beliefs and behaviour
• make supportive links between body and mind
Ask for referral through your GP during July or August.
For more info visit the Pathways2Wellbeing website.
Medical instrument manufacturer Medtronic have developed a new patient information website with detailed guidance for people interested in Spinal Cord Stimulation.
Although NICE has approved this treatment for certain pain conditions, very few people in the UK have been fitted with stimulators. It is important that both patients and doctors become more aware of this option so that people in pain can be offered the most appropriate treatment for their condition.
The new website www.tamethepain.co.uk provides detailed information about spinal cord stimulation and allows you to self-assess for whether it could be an appropriate treatment for you.
Disclaimer: Please note that Pain Concern cannot recommend treatments and accepts no responsibility for the content of external websites.
Pain Concern responds to new NICE Quality Standard statements issued 11 June 2015
Heather Wallace, Chair of Pain Concern said:
“What these eight new QS statements underline is that for over 7 million people in the UK with osteoarthritis the burden of pain is still not being addressed and crucial recommendations that could help people better manage their condition are simply not being put into practice. For many people with osteoarthritis the impact on their lives is enormous and may prevent them from working, being able to participate in sport or outdoor activities, or perform simple everyday tasks.
“There is no known cure for osteoarthritis and many of the standard medications available are ineffective, so it is vital for people to be able take control of their condition with a quicker diagnosis, an all-round assessment of how pain impacts on every aspect of their life and an agreed self-management plan which is regularly reviewed. GPs need to assess what a person diagnosed with osteoarthritis actually knows and understands about the condition and what their hopes and expectations for the future are.
“We know from the people who call our help line and from our own research into chronic pain that a number of significant barriers to effective communication between GPs and patients exist. Together with a lack of on-going support this is preventing access to effective treatment and therapies. GPs are still the gatekeepers for people with osteoarthritis and should be signposting them towards effective pain relief services such as physiotherapy and weight management which these standards show is not happening. In the absence of a cure or effective pain relief therapies, people with osteoarthritis need to be empowered with agreed effective plans to help them understand their condition and afford them some relief from their pain.”
For more information about the new QS standard click here.
To view the eight new standards, click here.
[Kwa habari zaidi kuhusu ukeketaji wa wanawake, tafadhali tazama waraka wetu wa habari za ukweli kuhusu ukeketaji wa wanawake.]
Maumivu endelevu na mapambano ya kukomesha ukeketaji wa wanawake.
Zaidi ya wanawake 100,000 nchini Uingereza wameathirika na ukeketaji wa wanawake pamoja na athari mbaya za muda mrefu ikiwemo maumivu endelevu. Janet Graves ameweza kusikia kutoka kwa waathirika wa ukeketaji wa wanawake na kwa wataalamu wa huduma ya afya wanaowatibu kuhusu desturi hii iliyoingizwa kitamaduni na namna ya kuing’oa.
Hana Gibremedhen na Valentine Nkoyo wanazungumzia athari ya kukeketwa walioipata wakiwa kama watoto juu ya afya yao ya kisaikolojia na ya kimwili na pia kuathiri uhusiano wao. Nkoyo pia anaelezea namna taasisi yake ya Mojato Foundation inavyohamasisha kupinga ukeketaji wa wanawake katika jamii zilizoathirika.
Uzoefu wa Gibremedhen wa maumivu ya kudumu yasiyotambuliwa baada ya ukeketaji wa wanawake unasisitizia ukosefu wa maarifa miongoni mwa wataalamu wa huduma ya afya. Kliniki zenye uzoefu wa kuona wanawake waliokeketwa ni muhimu sana, anasema Mkunga Mtaalamu Juliet Albert, kama wanatakiwa kupata huduma wanayoihitaji. Mkunga, ‘mpiganaji’ dhidi ya ukeketaji na mwasisi wa the Hope Clinic Aïssa Eden anatoa kisa chake na kusisitiza umuhimu wa elimu katika kuhakikisha usalama wa kizazi kijacho.
Valentine Nkoyo: wakati kisimi chote na midomo ya ndani na ya nje ya uke vimekatwa na kila kitu kimezibwa pamoja na likaachwa tundu dogo sana, unajua, kama kichwa cha njiti ya kiberiti. Na hiyo ni kwa ajili tu ya kuruhusu mkojo au damu ya hedhi kupita hapo. Unaweza kumfikiria mwanamke anaye fanya mapenzi na mwanamume katika tundu hilo dogo sana?
Hii ni Airing Pain, programu ambayo inaletwa kwenu na Pain Concern, shirika la msaada la Uingereza linalotoa taarifa na msaada kwa wale wanaoishi na maumivu miongoni mwetu na kwa wataalamu wa huduma ya afya.
Mimi ni Paul Evans na toleo hili linafadhiliwa na ruzuku kutoka Rosa, Mfuko wa Uingereza wa Wanawake na Wasichana.
Nkoyo: Siku ya harusi yao, huo ni wakati ambao mwanamme anatakiwa kufungua, wanapaswa kutumia nguvu kuingia tundu hilo dogo sana – unaweza kufikiria – na mara nyingine kama hawawezi kulifanya hilo, wanawake hulazimika kukatwa na mwanamme anapaswa kulala naye siku ya harusi. Hayo ni mateso. Kuzaa mtoto, mtoto anawezaje kutoka hapo? Hizi ni athari za kutisha wanawake wanaishi nazo.
Paul Evans: Ukeketaji wa wanawake unahusu taratibu zote ikiwemo uondoaji wa sehemu au kamili wa viungo vya nje vya uzazi vya mwanamke au jeraha jingine katika viungo vya uzazi vya mwanamke kwa sababu isiyokuwa ya kimatibabu. Nchini Uingereza inakadiriwa kwamba zaidi ya wanawake 100,000 wanaishi na athari za ukeketaji na wasichana elfu sitini wapo katika hatari.
Kwa toleo hili la Airing Pain Janet Graves atazungumza na waathirika, madaktari na wale wanaofanya kazi ili kukomesha desturi hii iliyoingizwa kitamaduni.
Juliet Albert: Jina langu ni Juliet Albert. Mimi ni mkunga mtaalamu wa ukeketaji wa wanawake. Ninafanya kazi katika Queen Charlotte Hospital, ambayo ni sehemu ya Imperial College Healthcare NHS Trust pia ni kiongozi wa mradi wa Acton African Well Woman Clinic.
Kuna aina nne tofauti za ukeketaji wa wanawake. Kwa jumla, ukeketaji wa wanawake huainishwa kama utaratibu wowote ambao una madhara na hauna kabisa faida za afya, ni hivyo utaratibu ambao unafanywa katika viungo vya uzazi vya mwanamke. Kuna aina nne tofauti za ukeketaji wa wanawake: aina ya 1 ni ambapo kifuniko cha kisimi au kisimi chenyewe kimeondolewa au kimekatwa; aina ya 2 ni ambapo kisimi na kifuniko cha kisimi na sehemu ya midomo na sehemu ya mbele vimeondolewa; aina ya 3 ni ambapo kisimi na kifuniko cha kisimi, wakati mwingine, na sehemu kubwa ya midomo vimeondolewa na kisha sehemu hiyo inashonwa kuunda kovu la mbele, na kuacha tundu dogo mno la kupitia mkojo na damu ya hedhi; na aina ya 4 ni taratibu nyingine yoyote, ambayo hujumuisha uchomaji wowote wa kitu kikali, utoboaji, uvutaji wa midomo, kimsingi, kitu kingine chochote ambacho kinafanywa katika viungo vya uzazi vya mwanamke.
Valentine Nkoyo: Jina langu ni Valentine Nkoyo na kwa asili ninatokea Kenya, katika jamii iitwayo Maasai. Nilikuwa na umri wa miaka 11 ambapo siku moja asubuhi mama yangu aliniita jikoni, alikuwa amemaliza kukamua ng’ombe maziwa na akasema ‘kuna kitu ambacho nataka kukizungumzia na wewe’. Na akaniambia, ‘umefika wakati wa wewe kuwa mwanamke’. Na sikujua hilo lilimaanisha nini. Na kisha nikamuuliza ‘unamaanisha nini, ninahitaji kuwa mwanamke? ’ Akasema ‘umefika wakati wa wewe kukeketwa. Wewe na dada yako mmekuwa wakubwa wa kutosha sasa’.
Hivyo jioni hiyo palikuwa na sherehe kubwa, chakula kingi na pombe na wanaume na wanawake walikuwa wanaimba na dada yangu na mimi na wasichana wengine wawili katika kijiji changu walikuwa wanaenda kukeketwa katika wakati huohuo. Na jioni, dada yangu na mimi tuliondolewa na tukanyolewa kwa sababu tunahitaji kuwa wasafi na tukapewa nguo mpya ambazo tulikuwa tunaenda kuzivaa wakati wa mchakato wote. Bibi zeu na shangazi zetu walitupa zawadi jioni hio na kisha tulitakiwa kupewa zawadi asubuhi na wajomba zetu baada ya kukeketwa.
Na kisha asubuhi majira ya saa kumi na mbili kamili tulivua nguo zetu na tukapewa blangeti ndogo, tunaziita lessos (kanga) na tukafunikwa nazo. Na tulikuwa na baridi sana, baridi kali mno. Dada yangu na mimi na wasichana wengine wawili kutoka kijijini hapo, tulipelekwa porini ambako walikuwa wanaenda kutekeleza upasuaji na walikuwa na kama kipande kikubwa cha kitambaa ambacho walikitandika ardhini na kisha palikuwa na ngozi ya mnyama juu.
Hivyo dada yangu alikuwa kushoto na wasichana wengine wawili kutoka kijijini hapo walikuwa kulia kwangu na wanawake wawili walishika miguu yangu na kuifungua, na kulikuwa na wanawake wengine ambao walinibana kwa nyuma, hivyo sikuweza kutikisika. Sikuweza kutikisa mikono yangu na sikuweza kutikisa miguu yangu na walikuwa wamekaza mno… kamwe sikuwahi kuhisi nimepanuliwa kama vile.
Ninakumbuka nilipotazama juu nikamwona mkeketaji na eeh – Mungu wangu – ninaweza kukumbuka kila kitu alichovaa. Ninaweza kukumbuka mapambo ya vito aliyovaa, rangi ya nguo zake… uso wake haujanitoka kamwe. Kila wakati ninapolizungumzia hili, bado uso wake upo. Si kitu ambacho kitatoeka, kwa sababu huyu ndiye mtu ambaye ataniadhibu katika maisha yangu, mtu ambaye ataniondoa kipande. Na ninakumbuka, nilifumba macho yangu kwa sababu sikutaka kumwona mpaka ulipofanywa upasuaji.
Hivyo nilifumba macho yangu. Na nilipofumba macho yangu niliweza kuhisi dada yangu akitikisika lakini hakuweza kupiga kelele yoyote na wanawake walikuwa wanasema ‘Usiwe mwoga! Usiwe mwoga!’ Na siwezi kukumbuka kiasi cha muda uliotumika lakini niliweza kuhisi anapambana nao lakini hakuweza kulia. Na kisha hilo likasimama na nikafumbua macho yangu na kisha nikamwona yule mwanamke tena na kisha nikayafumba tena, sikutaka kumwona tena. Kisha nikahisi mfinyo mkali sana kwenye kisimi changu na papo hapo nikaanza kuhisi wembe. Kwa kweli alitumia wembe ule ule alioutumia kwa dada yangu. Na nilianza kuhisi kila mkato aliokuwa anaufanya. Niliuhisi.
[Akitoa machozi] Na wanawake nyuma yangu walikuwa wanasema ‘Wewe ni msichana shujaa. Jikaze, tulia na hii itaisha hivi punde.’ Lakini nilihisi kama ni ya maisha yote. Na hasira ilikuwa… Sikuelewa kwa nini nilipaswa kufanyiwa ukeketaji. Ni kitu chenye kuumiza mno – hata huwezi kuyaelezea maumivu.
Na nakumbuka, walikuwa wanasema ‘Usilie!’ Lakini nilikuwa ninalia kwa ndani, lakini sikutaka kuiaibisha familia yangu kwa sababu ukipiga kelele au ukilia, hiyo inaweza kuwa ni doa daima. Na hata kwa mwanamme ambaye atakuoa, watajua kuwa ulilia ulipokuwa unakeketwa. Ni kitu fulani cha kisaikolojia ambacho huwezi kuishi nacho, hivyo unalia kwa ndani tu.
Kufanya mambo kuwa mabaya zaidi, alipomaliza kunikeketa, alichukua maji yenye chumvi na akamimina kwenye… kwenye kidonda kibichi. Na hiyo ilikuwa ni jahannamu. Siwezi hata kuelezea nilivyohisi, ilikuwa mbaya sana. fikiria kama una jeraha dogo mno na mtu aweke chumvi hapo, inatisha mno. Ni maumivu yale yale. Na nikifikiria kuwa mtoto mwengine anakaribia kufanyiwa hivyo, inanisikitisha sana, inanikasirisha sana.
Hivyo wakawakeketa wasichana wengine. Nilikuwa dhaifu mno, walinisaidia kusimama na kisha tukaenda na kusimama nje ya chumba tulichotakiwa kuponea. Wajomba zetu walitakiwa kutupa zawadi, hivyo tulizawadiwa ng’ombe, kondoo na, unajua, hela. Na ninakumbuka nilipotazama chini [analia kwa sauti] na nilikuwa nimesimama katika dimbwi la damu la damu yangu mwenyewe, niliweza kuiona ikimiminika. [Analia kwa sauti] sikuweza kufahamu kwa nini nilipaswa kupata maumivu yale, bado eti kulikuwa na watu wanasema kilikuwa ni kitu kizuri. Lakini hakikuwa kizuri na maumivu yalikuwa makali… si kitu unachoweza kukielezea.
Zawadi hazikuwa na maana kwangu, kwa sababu nilipokeketwa tu nilijua kitu kinachohusu maisha yangu kimeondolewa. Hivyo baada ya kupewa zawadi, tulirudishwa chumbani na nikapoteza fahamu. Ninakumbuka nilipopata fahamu tena walikuwa wanamimina koka-kola kooni kwangu. Hawakuweza kunipeleka hospitalini kwa sababu ingekuwa mbaya na wangeweza kukamatwa kwa kunikeketa. Lakini nilikuwa dhaifu sana kwa muda wa wiki tatu zote tulizotakiwa kupona.
Niliendelea kupata kumbukumbu za nyuma na kuona watu hawa ambao walikuwa wananifukuza, pengine ili kunikata koo langu au kuondoa kitu; na kisha nilijaribu kutoroka na walipokaribia kunikata niliamka. Kisha maumivu ni pale unapoamka haraka kwa sababu bado una kidonda na kisha kinaweza kikauma zaidi.
Tulipaswa kuchungwa kwa muda wa wiki tatu na kila siku walitumia maji yenye chumvi na Dettol, kipukusi, na harufu ya kipukusi, naichukia. Hata kama madaktari wameshauri hilo [kwa huzuni mno] siwezi kuitumia kwa sababu inanirudishia kumbukumbu. Ninafikiri athari za kisaikolojia zimeendelea kwangu. Si kitu ambacho kila mtu anatakiwa kukipitia.
Albert: Kwa bahati mbaya kuna matatizo mengi ya maumivu ya muda mrefu kama matokeo ya ukeketaji wa wanawake. Tunawaona wanawake katika kliniki yetu wenye maumivu ya muda mrefu, maumivu makali ya msamba kwa sababu ya ukeketaji, kwa mfano, maumivu ya kutoka mkojo, maumivu wakati wa kujamiiana, wakati mwingine maumivu ya kuendelea. Pia tunawaona wanawake ambao wanapata maumivu, tena wakati wa kujamiiana, kwa sababu, kwa mfano, kama wana aina ya 3 ambayo ni mbaya sana. Baadhi ya wanawake, maumivu yao ni kutokana na kuzaa watoto, ambayo ni matokeo ya kuzaa watoto na ukeketaji. Hivyo inatofautiana mno. Na kisha wanawake wengi wana maumivu mengi ya hisia. Hivyo tunaona wanawake, kwa mfano, ambao wanaweza kuwa na aina ya 1 ambayo labda si mbaya sana, lakini watakuwa na kumbukumbu zote za kukandamizwa, kutokwa damu, maumivu, bila kutumia ganzi. Na, matokeao yake, maumivu yao ya kisaikolojia ni makali mno, vibaya sana.
Hana Gibremedhen: Jina langu ni Hana. Ninatoka Afrika Mashariki, Ethiopia, lakini kwa asili ninatoka Eritirea. Nilipokeketwa nilikuwa nina umri wa miaka tisa takriban. Na ilikuwa asubuhi mapema nilipoambiwa niende chumbani, chumba kitupu na kisha mwanamke – si mkunga anayestahili lakini [mkunga] wa kitamaduni – aliniambia nikae humo. Na watu wengine wawili, walikuwa wameshika miguu yangu na kisha baada ya hapo ilikuwa inauma sana.
Kwa kawaida wanalifanya hili katika umri mdogo, [wakati ukiwa] msichana mdogo baada ya kuzaliwa – wiki 18 au zaidi kidogo, wakati huo ndiyo ambao wanakeketa kwa kawaida. Lakini kwa sababu fulani mimi nilichelewa, nilipokuwa nina miaka tisa, hivyo ninatakiwa kufanyiwa. Nchini kwetu wanaamini kukeketa ni kama kumlinda mwanamke – kutoenda na wanaume mbalimbali, kukulinda, kukutuliza, lakini hawatambui kuwa baada ya kukeketwa kuna athari gani – inauma sana.
Baada ya kumaliza, inauma zaidi kwa sababu wanakuhudumia kwa vitu vya kitamaduni, kwa sababu huendi hospitalini wala hutibiwi kwa vitu vinavyostahili. Wanatumia mitishamba na kisha wanaiweka kwenye sehemu yako ya siri kila asubuhi. Inaunguza sana, inauma sana. siwezi kuisahau.
Albert: Mwanamke mwenye aina ya kwanza, ambaye labda amepata aina ya ukeketaji yenye kikomo kidogo cha mwili, anaweza kuwa na athari mbaya sana za kisaikolojia, ambazo zinaweza hata zisijitokeze mpaka anapokuwa mjamzito. Hivyo kuna wanawake ambao tumekutana nao ambao wamezika ukeketwaji wao na hawajaufikiria, hawajauzungumzia na ghafla, wakati wa mimba na wa kuzaa mtoto, ghafla wanapata kumbukumbu za nyuma na tukio lote linawarejea tena, kwa sababu unaweza kufikiria kwa dhahiri wakati wa uchunguzi wa uke, ghafla inakumbusha sehemu walipokuwa alipokuwa mtoto wakati ukeketwaji wao ulipotekelezwa.
Hivyo, haijalishi sana walipata aina gani, inaweza kuwa kwamba kuzaa mtoto kukawa na athari kali za kihisia. Na kisha bila shaka tuna wanawake ambao wana aina mbaya mno za kimwili, kama aina ya 3 hasa, ambapo labda wameweza hata kupambana ili kuwa wajawazito, kwa sababu kama wana tundu dogo sana – kama ni mduara upatao nusu sentimita – upenyaji wakati wa kujamiiana unakuwa ni wenye maumivu makali kama si wenye kushindikana. Tuna wanawake watatu au wanne kila mwaka ambao wanakuja kliniki kwetu ambao ni wajawazito, licha ya kuwa na tundu dogo mno kama hilo. Na siku zote ninasema, ‘usiwe mjinga na kufikiri haiwezekani kwa sababu inaweza ikawezekana’.
Gibremedhen: Tangu niwe mjamzito, nilikuwa na maumivu muda mwingi. Na wakati mwingi wa kuzaa, ilikuwa ni jinamizi kwangu. Ilikuwa ni siku nne za usiku na mchana ili niweze kuzaa, kwa sababu daktari ambaye alinichunguza alisema nitashonwa kwa sababu ya kukeketwa kwangu. Si rahisi kufunguka inavyostahili na kisha kuzaa kawaida.
Albert: Kwa wale wanawake wenye aina mbaya sana ya 3, wanahitaji kufunguliwa, inapendeza kabla ya kuzaa – kabla ya kwenda leba – kwa sababu kwa kweli kufanya uchunguzi wa uke kuna maumivu sana, pia ngumu sana kwa mtu anayejaribu kulifanya hilo. kuingiza katheta ya mkojo ni ngumu sana na kama mwanamke anafika leba, kwa mfano. Baadaye sana labda anapokuwa tayari yuko katika hatua ya pili, tayari anasukuma, kisha inaweza kuwa taratibu ya dharura kumfungua kwa mtu ambaye labda kamwe hata hajaona mwanamke aliyekeketwa kabla na labda hajui nini wanafanya. Inaweza kumaanisha kuwa mwanamke ataishia kuzaa kwa kupasuliwa kwa sababu mkunga hajui njia bora ya kulishughulikia.
Kisha baada ya kuzaa pia kuna matatizo mengi, pamoja na mpasuko mbaya sana kwa sababu wana tishu nyingi zenye kovu katika eneo hilo. Kwa kiasi kikubwa wanaonekana kupata hemoraji baada ya kujifungua, kutokwa damu nyingi na kisha kwa sababu hiyo, kwa dhahiri, maumivu makali ya mwili.
Gibremedhen: Nesi, hawana elimu yoyote ya ukeketaji. Na nilipozaa mtoto wangu, baada ya mwezi… kwa kweli nilipata miezi minne ya maumivu na nilipoenda hospitalini na kuwaambia ‘bado nina maumivu. Ninaposimama ninahisi kuwa kitu kinanikandamizia chini.’ Ilikuwa kama nilikuwa ninatikisika katika mwili wangu. Na nilipokwenda kwa daktari wangu muda wote, walisema mishono yote ni mikavu na huna tatizo lolote, lakini hawagundui nini kinaendelea ndani.
Albert: Wakati mwingine wakati wanawake wanaenda hospitalini, ninafikiri – au labda hata kwa daktari – na wakachunguzwa, kwa mara ya kwanza katika viungo vya uzazi, inaweza kuwa mtu hajawahi kuona ukeketaji kabla. Mnasikia hadithi kutoka kwa wanawake na pia kuna utafiti, kwa kweli – Forward alifanya utafiti uitwao ‘The Peer report’, ambapo wanawake walieleza mshtuko wa wataalamu wa huduma ya afya walipowaona, ukeketwaji wao na kuwaleta wataalamu wengine wa afya ili watazame. Wakati mwingine hata walishtuka kwa sauti kwa namna walivyoshtushwa na kwa kukata tamaa huwafadhaisha sana wanawake wenyewe.
Hivyo ninafikiri ni muhimu sana kuwa na wataalamu wa ukeketaji wa wanawake ambao mwanamke anaweza kuhamishiwa pia. Ili, kwa mfano, kama mwanamke ataenda kwenye kipimo cha uzazi, kama nesi huyo au daktari hajaona ukeketaji kabla na amefahamu kuwa haionekani sawa kama ionekanavyo kwa kawaida – sipendi kutumia neno ‘kawaida’ kwa sababu najua linaweza kuwafadhaisha wanawake – wanaweza kuwahamishia kwa mtaalamu wa ukeketaji. Na mjni London, kuna kliniki kadhaa za wataalamu wa ukeketaji, lakini nyingi ni hospitali zinazohusu au zimeunganishwa na huduma za uzazi na kliniki, hivyo ni nadra sana kupata kliniki ya jamii kama yetu, ambayo iko wazi kwa wanawake wasiokuwa wajawazito pia.
Kuna kliniki Bristol ambayo ilifunguliwa mwaka jana ambayo inaongozwa na daktari, ambayo inafuata mtindo wetu katika Acton, lakini hakuna huduma nyingi zinazofanana na hizi. Na, ijapo kuwa London ina kliniki nyingine, kama nilivyosema, ambapo wanawake wanaweza kufika… kuna kliniki ya ukeketaji maarufu sana Birmingham, moja mjini Oxford… Hivyo kuna vituo vya ubora, lakini pia kuna sehemu ambapo kwa kweli hakuna kitu kwa wanawake. Kwa hivyo kuna vituo vyenye ubora, lakini pia kuna sehemu ambazo hakuna chochote anachoweza kupata mwanamke. Huenda kukawepo na vikundi vya kijamii au mashirika ya sekta ya tatu lakini hawana njia ya kufikia huduma za NHS za mtaalamu. Na hili ni tatizo kwa mwanamke anayeishi mjini Newcastle kuweza kukutana na mimi mjini London kidhahiri ni vigumu sana.
Tulikuwa na mwanamke anayetoka Ireland Kaskazini miezi miwili iliyopita. Alisema aliondoka nyumbani saa kumi kamili asubuhi ili kusafiri (kwa ndege) kuelekea London kuja katika kliniki yetu kwa sababu hakujua pakwenda na alikuwa amezaa watoto watatu kwa upasuaji. Wawili miongoni mwao walizaliwa mjini Newcastle na mmoja Ireland Kaskazini na alisema wakati wa kuzaa kwake kwa upasuaji hakuna mtu yeyote alitaja ukeketwaji wake hata mara moja. Sasa ni watu wapatao watatu ambao wameweka katheta ya mkojo na hawajataja alikuwa na aina mbaya ya 3 ya ukeketaji. Hivyo kuna matatizo ya waziwazi kwa wataalamu wa huduma ya afya ya kutojua namna ya kuwasaidia wanawake wenye ukeketaji.
Aïssa Eden: Jina langu ni Aïssa Eden. Mimi ni mkunga lakini pia ni mkunga mtaalamu katika masuala ya ukeketaji na mimi pia ni wale tunaowaita ‘mwathirika wa ukeketaji’, lakini ninapenda kujiita ‘mpiganaji’.
Ukiangalia usuli wa desturi ya ukeketaji wa wanawake, inafanywa na wanafamilia, bibi au mama – mtu unayemwamini, ambaye atakupeleka sehemu, ambapo utapata maumivu makali mno katika maisha yako, hali mbaya mno katika maisha yako. Hivyo, kuamini masuala inaweza kuwa moja ya athari za kisaikolojia za ukeketaji.
Ilifanywa nilipokuwa nina umri wa miaka sita pamoja na dada yangu mdogo, alikuwa ana umri wa mwaka mmoja tu. Na nililia kwa hatia kwa sababu, kwangu mimi, dada yangu hakupaswa kufanyiwa vile. Ilitekelezwa kwetu sisi wawili kwa sababu nilikuwa katika mchakato wa kusafiri kuelekea Ufaransa. Hivyo alikuwa hajapangiwa katika muda huu – walifanya hivyo kwa sababu mimi ndiyo nilikuwa ninasafiri. Walifikiria, ‘oh, acha tuwafanyie wote wawili’. Hivyo nilikuwa na hatia kwa muda mrefu kwa ajili ya dada yangu kwa sababu nilifikiri lilikuwa ni kosa langu.
Nilianzisha kliniki – niliita the Hope Clinic – ili kutoa huduma ya jumla kwa wanawake na familia zao. Tunafanya kazi na wanawake na tuna mradi, tuna mpango hasa kwa mwanamke huyu, kama huduma binafsi sana. Lakini pia ni elimu na kinga kwa sababu wakati unapaswa kwenda kwa ajili ya afya, ninafikiri unakuwa umechelewa sana. Hivyo elimu na kinga ni muhimu sana. Hatutaki mtu yeyote afanyiwe ukeketaji.
Albert: Kwa wanawake ambao wamekuwa na aina ya 3 ya ukeketaji – aina mbaya mno – kuna utaratibu unaitwa kuondoa mshono au ‘kufungua’ kweli. Kwa kweli tunapasua kovu la mbele, ili tufunue tundu la uke na tundu la mkojo chini ya tishu za kovu. Na kisha tunashona mipaka ya tundu hilo ili kuzuia kuungana tena pamoja. Wakati mwingine kihistoria, hii ilikuwa inaitwa ‘urudishaji nyuma’ lakini tunajaribu kutotumia istilahi hiyo kwa sababu huwezi kurudisha ambacho kimeondolewa. Hivyo kwa wanawake wenye aina ya 3, kwa kweli kuna utaratibu wa kimwili ambao unaweza kufanyika wakati mwingine. Wakati mwingine haiwezekani kufanyaka, hivyo kwa wanawake endapo kuna utata zaidi, kwa mfano, ambapo wana uvimbe pia aina yao ya 3, au wakati mwingine ambapo tishu za kovu zimeungana na tundu la mkojo, inafanya uondoaji wa mshono kuwa mgumu sana. Hivyo kwa baadhi ya wanawake hatuwezi, lakini utaratibu huu wa kuondoa mshono wa tundu ni utaratibu mdogo sana kwa kweli na unaweza kufanywa chini ya ganzi ya mtaa katika hospitali isiyolaza.
Hivi karibuni tulikuwa na mwanamke ambaye alikuwa amezibwa kwa miaka karibu 40 na kwa kweli alichunguza kwa furaha kwamba mwisho wake alifunguliwa [anacheka]. Wanawake wengine ambao wamekuwa wana watoto kadhaa, ambao wamekuwa tunavyoita ‘kuondolewa mshono’, au wamezibwa, kati ya watoto na kisha, tena, ambao wamekuja kutuona kwa sababu wanataka kufungua.
Kwa wale wanawake ambao wamekuwa na aina nyingine ya ukeketaji, kwa kweli hakuna utaratibu wa kimwili tunaoweza kufanya. Kwa kweli, wanahitaji ushauri mwingi na msaada wa kisaikolojia. Hivi karibuni tulikuwa na mwanamke – mwanamke kijana – ambaye alikuja kutuona, ambaye alitaka kujua alikuwa ana aina gani. Nilipochunguza, nilimweleza kuwa alikuwa aina ya 1 na nikamweleza kuwa hatungeweza kurudisha chochote ambacho kimeondolewa – baadhi ya kifuniko cha kisimi chake kilikuwa kimeondolewa na kisimi chake kilikuwa kimeondolewa. Na alikuwa amefadhaika vibaya sana. Akasema ‘nataka unifanye niwe kawaida tena kama kila mtu mwengine, nataka urudishe walichoondoa.’ Na alikuwa amechanganyikiwa sana kwa sababu alikuwa anataka kitu ambacho hatukuweza kumpa.
Nkoyo: Niliahidi kuwa sitathubutu kukaa na kuangalia wapwa zangu wanaenda kufanyiwa nilichofanyiwa. Hivyo nilianza kuzungumza na wanafamilia mbalimbali na, mwaka jana tu, mama yangu, dada zangu na kaka waliahidi. Na ilinichukuwa muda mrefu, kuchukuwa simu na kuomba msamaha na nikisema ‘nitazungumzia kitu ambacho kwa kawaida hatukizungumzii kwa uwazi’. Na nilizungumza – huyu alikuwa kaka yangu kwa kweli – kwa sababu nilisema nilitaka ajue nilichofanyiwa na ninachoishi nacho. Na nikasema ‘ninataka uniambie kama unataka binti yako afanyiwe hivyo’. Na nilipoeleza kila kitu, alisema ‘kamwe sitaruhusu hilo litokee. Na nikijua kuhusu yeyote ambaye ana nia ya kufanya hivyo, nitachukua hatua.’
Hivyo kwa mimi, nimefanikiwa kushughulikia sehemu ya kisaikolojia ya suala hilo kwa kusaidia wengine. Hivyo Taasisi ya Mojatu ni taasisi isiyolenga faida. Tupo Nottingham na kwa kiasi kikubwa tunafanya kazi na jamii za Kiafrika na za Kikaribiani. Tunazalisha matoleo sita ya gazeti letu la jamii linaloitwa Mojatu na tunalitumia ili kukuza ufahamu wa masuala ambayo yanaathiri jamii za Kiafrika na za Kikaribiani.
Kitu muhimu sana kwa kweli ni kuwasaidia watu kufahamu sehemu ulipo msaada. Hivyo ambacho nimekuwa nikikifanya mimi mwenyewe ni kutoka na kuzungumza na waathirika na kuwapa moyo wanawake ambao wamefanyiwa ukeketaji watafute msaada wa kimatibabu. Na hilo halitasaidia hali zao za afya tu lakini pia litasaidia ukusanyaji wa data, kufahamu ukubwa wa tatizo kimtaa na pia kitaifa, ili hili lifanikiwe kwa njia bora zaidi. Lakini tunahitaji kupata juhudi zilizoratibiwa kutoka polisi, kutoka halmashauri ya jiji, kutoka katika jamii na pia kuhusisha waathirika.
Na sasa tuna kikundi cha Nottingham cha kuongoza ukeketaji wa wanawake. Na mimi ni sehemu ya bodi hiyo kama mwakilishi wa jamii. Na nafikiri hili lina nguvu sana, kuwaleta watu wote pamoja na kupata maoni ya kila mtu. Na, kwangu mimi, kitu ambacho nimekuwa nikijaribu kukifanya ni kuwatia msukumo waathirika wajue kuwa kwa kweli ni sawa kuzungumzia kilichowatokea na ni sawa kuwashirikisha watu wengine, kwa sababu hiyo ndiyo njia pekee watu wanaweza kuungana kwa kile kilichotokea na pia kuchukua hatua ili kusaidia wasichana. Na, kwa sehemu kubwa ya wafanyakazi ambao nimekuwa nikifanya nao kazi, wanasema imewatia nguvu sana kuhisi kuwa wao ni sehemu ya mchakato huu wa kufanya maamuzi kuhusu namna gani ukeketaji unaweza ukashughulikiwa. Na kwangu mimi, ninaamini kabisa kuwa wao ni kikosi chenye nguvu katika kujisaidia wenyewe kushughulikia maumivu ya kilichotokea na athari zote na kuwalinda wasichana wetu.
Evans: Huyo alikuwa ni mwathirika wa ukeketaji, Valentine Nkoyo. Kwa habari zaidi kuhusu Taasisi ya Mojatu nenda katika tovuti yake valentinenkoyo.com. na ‘Nkoyo’ inaandikwa ‘N’ ‘K’ ‘O’ ‘Y’ ‘O’. Taasisi nyingine zilizotajwa ni The Hope Clinic na tovuti yao ni fgmhopeclinic.co.uk na kuna orodha kubwa ya kliniki za ukeketaji na njia katika tovuti forwarduk.org.uk. Viungo vyote hivi vipo katika tovuti ya Pain Concern ambako unaweza kupakua hii na kila toleo la Airing Pain na pia nakala na habari zaidi kuhusu ukeketaji na mada nyingine zinazohusu maumivu. Unaweza kusoma kuhusu ukeketaji katika toleo la 62 la mwezi huu la gazeti la Pain Matters na, kama ninavyosema, maelezo yote haya yanapatikana katika tovuti ya Pain Concern painconcern.org.uk.
Nitakukumbusha kwamba wakati katika Pain Concern tunaamini kwamba habari na maoni yaliyopo Airing Pain ni sahihi na thabiti, zinazohusu hukumu bora iliyopo, siku zote unatakiwa kupata ushauri wa mtaalamu wako wa afya kuhusu suala lolote linalohusu afya yako na ustawi. Yeye ndiye mtu pekee anayekujua wewe na hali zako na kwa sababu hiyo hatua inayostahili kuchukuliwa kwa niaba yako.
Albert: Ninajisikia vizuri sana, kwa kweli, kwamba wanawake wengi tunaowaona katika kliniki zetu na hasa wanawake ambao wamepata maumivu katika kipindi cha miaka, bila shaka hawana nia ya kuwafanyia mabinti zao wenyewe na, kwa kweli, wanajisikia vizuri sana kuhusu kutowafanyia mabinti zao na wanafamilia wengine. Ninafikiri kuwa wanawake wanaelimika kuhusu utata wa afya wa ukeketaji na kwa kweli sasa wanaelewa kiungo kati ya vitu hivyo viwili.
Ninafikiri, kihistoria, unaweza ukafikiria ikiwa mwanamke hakuwa na elimu kuhusu anatomia yake, hakujua chochote kuhusu biolojia na mtu mwengine yeyote kuwa ni sawa nayeye, wasingefanya hata muunganisho kati ya ukeketaji na maumivu ya kimwili aliyonayo. Na sasa ninafikiri kuwa wanawake ambao wanaelimishwa katika nchi hii na wanawaona watoto wao wanaenda kupitia utaratibu wa elimu… Ninafikiri inapaswa kufanya usawa na matarajio makubwa kwa kweli ni dhidi ya desturi na wanaume pia – kwa kweli tunaona familia ambazo zinaelewa kuwa ukeketaji ni kitu kibaya.
Sasa, bila shaka, sipaswi kuwa mjinga kwa sababu nina uhakika kuna sehemu ndogo ambako kuna watu ambao bado wanataka kuendelea na desturi hii. Na wasiwasi wangu ni kwamba wakati mwingine wanaweza kufanya aina mbaya kidogo ya ukeketaji, kwa sababu wanaamini hii ni mila ya kitamaduni ambayo tunahitaji kuiendeleza na tukifanya aina mbaya kidogo, hiyo ni sawa. Hivyo tunatumia muda mwingi pia kuwaeleza wanawake kuwa hata aina mbaya kidogo sana, itakuwa na athari mbaya sana ya kisaikolojia na kwamba wanaelewa hilo ni ukiukaji wa haki za binadamu.
Nkoyo: Nina matumaini sana kuwa kwa kweli tunaweza kukomesha ukeketaji katika kizazi. Nilikuwa msichana wa mwisho katika familia yangu na nikatoa kipaumbele kwamba sitavumilia na kuona mtu yeyote katika familia yangu anaenda kufanyiwa hivyo, hivyo wanne katika wapwa zangu waliokolewa mwaka jana kufanyiwa ukeketaji. Kazi kubwa bado inahitajika na najua kuna watu safi sana huko, mtu kama Lynn Featherstone [mbunge wa zamani wa Liberal Democrat] amekuwa ni mwenye msaada sana katika kampeni na madaktari… kuna Dokta Comfort Momoh, kuna Forward, kuna Taasisi ya Mojatu… kazi zote tunazozifanya ili kuongeza utambuzi… haitatokea kesho, ni mchakato wa polepole, lakini tutaweza kushughulikia ukeketaji na ni wajibu wa kila mtu kuwachunga wasichana wetu.
Wachangiaji:
Persistent pain and the fight to end female genital mutilation
For more information about FGM, please see our FGM factsheet.
[Tafadhali bofya hapa ili kusoma nukuu ya nakala ya programu hii iliyofasiriwa kwa Kiswahili.]
To listen to this programme, please click here.
Over 100,000 women in the UK have been affected by female genital mutilation (FGM) with devastating long-term consequences including persistent pain. Janet Graves hears from FGM survivors and the healthcare professionals treating them about this culturally-embedded practice and how to uproot it.
Hana Gibremedhen and Valentine Nkoyo speak about the impact being cut as children has had on their psychological and physical health as well as their relationships. Nkoyo also explains how her Mojato Foundation is working to mobilise opposition to FGM from within the communities affected.
Gibremedhen’s experience of undiagnosed chronic pain after FGM highlights the lack of knowledge among healthcare professionals. Clinics with experience in seeing women with FGM are vital, says Specialist Midwife Juliet Albert, if they are to get the care they need. Midwife, ‘fighter’ against FGM and founder of the Hope Clinic Aïssa Eden shares her story and stresses the importance of education in ensuring the safety of the next generation.
Issues covered in this programme include: FGM: female genital mutilation, women’s pain, women and girls, pelvic pain, urogenital pain, trauma, PTSD, mental health, childbirth, pregnancy, menstruation and periods.
Valentine Nkoyo: When the entire clitoris and the labia minora and labia majora are cut off and everything is sealed together and a very tiny hole is left, you know, like the head of a matchstick. And that’s only to allow urine or the menstrual period to go through. Can you imagine a woman having sex with a man in that tiny hole?
This is Airing Pain, the programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and for healthcare professionals.
I’m Paul Evans and this edition is supported by a grant from Rosa, the UK Fund for Woman and Girls.
Nkoyo: On the day of their wedding, that is when the man is supposed to open up, they have to force themselves through that tiny hole – you can imagine – and sometimes if they can’t do it, they have to be cut up and the man has to sleep with her on the day of the wedding. That is torture. Childbirth, how can a child come out of there? These are the terrible consequences women are having to live with.
Paul Evans: Female genital mutilation FGM refers to all procedures involving partial or total removal of the external female genitalia or other injury to the female genital organs for non-medical reasons. In the UK it is estimated that over 100,000 women are living with the consequences of FGM and sixty thousand girls are at risk.
For this edition of Airing Pain Janet Graves talks to survivors, clinicians and those working to eradicate this culturally embedded practice.
Juliet Albert: My name is Juliet Albert. I’m a specialist FGM midwife. I work at Queen Charlotte Hospital, which is part of Imperial College Healthcare NHS Trust and I’m also project lead for the Acton African Well Woman Clinic.
There are four different types of FGM. Overall, FGM is defined as any procedure that is harmful and has absolutely no health benefits, so a procedure that’s done to the female genitals. There are four different types of FGM: type 1 is where the hood of the clitoris or the clitoris itself is has been removed or cut; type 2 is where the clitoris and clitoral hood and part of the labia and the anterior part has been removed; type 3 is where the clitoris and clitoral hood, sometimes, and most of the labia has been removed and then the area is stitched up to form an anterior scar, leaving a very, very small opening with which to pass urine and menstrual blood; and type 4 is any other procedure, so that includes any pricking, piercing, stretching of the labia, basically, anything else that’s done to the female genitals.
Valentine Nkoyo: My name is Valentine Nkoyo and I’m originally from Kenya, from a community called the Maasai. I was 11 years old when one morning my mother called me into the kitchen, she had just finished milking the cows and she said ‘there’s something that I want to speak to you about’. And she said to me, ‘it’s time for you to become a woman’. And I didn’t know what that meant. And then I asked her ‘what do you mean, I need to become a woman?’ She said ‘it’s time for you to be cut. You and your sister are big girls enough now’.
So that evening there was a big celebration, a lot of food and alcohol and the men and women were singing and my sister and I and two other girls in my village were going to be cut at the same time. And in the evening, my sister and I were taken away and we were shaven because we needed to be clean and we were given new clothes that we were going to wear during the entire process. We were given presents that evening by the elderly ladies, by our aunties and then we were to be given presents in the morning after FGM by our uncles.
And then in the morning around six o’clock we took off our clothes and we were given tiny blankets, we call them lessos and they were wrapped around us. And we were so cold, really, really cold. My sister and I and the two other girls from the village, were taken to the bushes where they were going to carry out the operation and they had like a big piece of cloth that they laid out on the ground and then there was hide on top.
So my sister was on the left and the other two girls from the village were on my right and two women grabbed my legs and opened them, and there were other women who pinned me down from the back, so I couldn’t move. I couldn’t move my hands and I couldn’t move my legs and it was the tightest… I’ve never felt so spread out like that.
I remember looking up and I saw the cutter and – my God – I can remember everything that she wore. I can remember the jewellery she wore, the colour of her clothes… her face has never left me. Every time I talk about it, it’s still there. It’s not something that will go away, because this is someone who is going to punish me for a lifetime, someone who is going to take a piece of me away. And I remember, I closed my eyes because I didn’t want to see her until the operation was done.
So, I closed my eyes. And when I closed my eyes I could feel my sister moving but she couldn’t make any noises and the women were saying ‘Don’t be a coward! Don’t be a coward!’ And I can’t remember the amount of time it took but I could feel her struggling with them but she couldn’t cry. And then that stopped and I opened my eyes and then saw the woman again and then I closed them again, I didn’t want to see her again. Then I felt a very sharp pinch on my clitoris and immediately I started feeling the razor. She actually used the same razor she used on my sister. And I started feeling each and every cut she was making. I felt it.
[Tearful] And the women behind me were saying ‘You are a brave girl. Keep strong, keep still and this will soon end.’ But it felt like a lifetime. And the anger was… I didn’t understand why I had to go through FGM. It’s such a painful thing – you can’t even explain the pain.
And I remember, they were saying ‘Don’t cry!’ But I was crying from the inside, but I didn’t want to shame my family because once you scream or cry, that would be a mark forever. And even for the man that will marry you, they will know that you cried when you were being cut. It’s such a psychological thing that you can’t live with, so you just cry from the inside.
To make things worse, after she finished cutting me, she took salty water and poured on the raw… the raw wound. And that was hell. I can’t even explain how it felt, it was so bad. Imagine if you had a tiny cut and someone put some salt on that, absolutely horrendous. It’s the same pain. And if I imagine another child is about to go through that, it makes me really upset, it makes me really angry.
So they cut the other girls. I was so weak, they helped me to stand up and then we went and stood outside the room we were supposed to heal from. Our uncles were supposed to give us presents, so we were offered cows, sheep and, you know, money. And I remember looking down [sobs] and I was standing in a pool of blood of my own blood, I could see it flowing. [Sobs] I couldn’t understand why I had to go through that pain, yet there were people there still saying it was a good thing. But it wasn’t and the pain was absolutely… it’s not something you can explain.
To me the presents didn’t count, because immediately I was cut I knew something about my life was taken away. So after we were given the presents, we were taken back to the room and I passed out. I remember when I regained consciousness they were pouring coke down my throat. They couldn’t take me to hospital because that would have been bad and they would have been caught for cutting me. But I was so weak for the whole three weeks we were supposed to heal.
I kept getting flashbacks and just seeing these people who were running after me, maybe to cut my throat or to take something away; and then I would try running away and when they were about to cut me I would wake up. Then the pain is when you wake up quickly because you still have the wound and then it would just make it even worse.
We had to be looked after for three weeks and every day they would use the salty water and Dettol, the disinfectant, and the smell of the disinfectant, I hate it. Even if the doctors recommended it [very distressed] I can’t take it because it brings back the memories. I think for me the psychological impact has continued. It’s not something that anybody should go through.
Albert: There are unfortunately multiple long term pain problems as a result of FGM. We see women in our clinic with long term pain, complex perineal pain as a result of FGM, for example, pain passing urine, pain during sexual intercourse, sometimes just constant continuous pain. We also see women who are having pain, again during sexual intercourse, because, for example, if they have a very severe type 3. Some of the women, their pain is from having had children, which is a consequence of having children and their FGM. So it does vary considerably. And then a lot of women have a lot of emotional pain. So we see women, for example, who may have had the less severe type 1 perhaps, but they will have all the memories of being held down, bleeding, the pain, no anaesthetic being used. And, as a consequence, their psychological pain is very extreme, very severe.
Hana Gibremedhen: My name is Hana. I’m coming from East Africa, Ethiopia, but originally from Eritrea. I was probably about nine years old when I had FGM. And it was early morning that I was told to go in the room, an empty room and then the lady – not a proper midwife but [a] traditional [practitioner] – she told me to sit there. And the other two people, they were holding my legs and then after that it was really painful.
Normally they do it in early age, [when you are] a little girl after you are born – 18 weeks or something, that’s when they normally do it. But for some reason mine was late, when I was nine years, so I should have it. In our country they believe having FGM is like protecting the woman – not to go with different men, protect you, to make you calm, but they don’t realise that after you have the FGM what are the consequences – it is very painful.
After they did it, it’s more painful because they treat you with traditional things, because you’re not going to hospital or you not being treated with proper things. They just use herbal [remedies] and then they put it every morning on your private area. It really burns, it’s really painful. I can’t forget it.
Albert: A woman with type one, who’s had perhaps a less physically limiting type of FGM, might have very severe psychological consequences, which may not even arise until she is pregnant. So there are women we have met who have buried their FGM and haven’t thought about it, haven’t spoken about it and suddenly, during pregnancy and childbirth, they suddenly have flashbacks and the whole thing comes back to them, because you can imagine obviously during a vaginal examination, it suddenly reminds of the place where they were as a child when their FGM was carried out.
So, it doesn’t necessarily matter what type they had, it may be that childbirth has a lot of severe emotional consequences. And then of course we have the women that have the more severe physical types, like type 3 in particular, where they may have even struggled to get pregnant, because if they have a very small opening – if it’s about half a centimetre diameter – sexual penetration is incredibly painful if not impossible. We do have three or four women every year who come to our clinic who are pregnant, despite having a very tiny opening like that. And I always say, ‘don’t be naive and think it’s not possible because it can be possible’.
Gibremedhen: Since I am pregnant, I had pain most of the time. And most of the delivery time, it was a nightmare for me. It was four nights and four days for delivery, because the doctor who assessed me said I’m going to have to stitch because of my FGM. It’s not easy to open properly and then to have a normal delivery.
Albert: For those women with very severe type3, they need to be opened, preferably in ante-natal – before going into labour – because actually doing a vaginal examination is very painful, also very difficult for the person trying to do it. Putting in a urinary catheter is extremely difficult and if the woman arrives in labour, for example. very late on perhaps when she’s already in the second stage, she’s already pushing, then it may be an emergency procedure to open her by somebody who perhaps has never even seen a woman with FGM before and perhaps doesn’t know what they’re doing. It may mean the woman will end up with a caesarean section because the birth attendant doesn’t really know the best way to deal with it.
Then after the birth there’s also lots of problems, with very severe tearing because they have a lot of scar tissue in the area. They’re much more likely to have post-partum haemorrhage, extra bleeding and then as a consequence, obviously, lots of physical pain.
Gibremedhen: The nurse, they don’t have any knowledge of FGM. And after I had my baby, after a month… I got really four months of pain and when I went to hospital and said to them ‘I’ve still got pain. When I stand I feel that something is pushing me down.’ It was like I was shaking in my body. And when I went to my GP all the time, they said all the stitches are dry and you don’t have any problems, but they’re not realising inside what’s going on.
Albert: Sometimes when women go into hospitals, I think – or perhaps even to a GP – and they’re going to be examined, for the first time genitally, it may be the person has never seen FGM before. You hear stories from women and there is also research, actually – Forward did a piece of research called ‘The Peer report’, where women described healthcare professionals’ shock at seeing them, their FGM and bringing other healthcare professionals in to have a look. Sometimes even exclaiming loudly how shocked they were and really desperately upsetting the women themselves.
So I think it’s terribly important to have FGM specialists that woman can be referred too. So that, for example, if a woman does go for a smear test, if that practice nurse or GP hasn’t seen FGM before and has noticed that it doesn’t look the same as it normally looks – I don’t like to use the word ‘normal’ because I know it can upset women – that they would then refer them to a FGM specialist. And in London, there are several specialist FGM clinics, but most are hospital based or linked to maternity services and clinics, so it’s quite unusual to find a community clinic like ours, which is open to non-pregnant women as well.
There is a clinic in Bristol which opened last year which is GP-led, which is based on our model in Acton, but there aren’t many services similar to this. And, although London has got other clinics, as I said, where women can access… there is a very well-known FGM clinic in Birmingham, one in Oxford… So there are centres of excellence, but there are also places where there is literally nothing really for women. There may be community groups or third sect organisations, but they don’t have access to specialist NHS services. And this is a problem for a woman who lives in Newcastle to see me in London is obviously very, very difficult.
We had a lady come from Northern Ireland a couple of months ago. She said she left home at four o’clock in the morning to fly over to London to come to our clinic because she didn’t know where to go and she had had three children by caesarean section. Two of them were born in Newcastle and one in Northern Ireland and she said not once during her caesarean sections did anybody mention her FGM. Now that’s at least three people who have placed a urinary catheter and not mentioned she had a severe type 3 FGM. So there are definitely problems with healthcare professionals not knowing how to help women with FGM.
Aïssa Eden: My name is Aïssa Eden. I am a midwife but I’m also a specialist midwife on FGM matters and I’m also what we call ‘a survivor of FGM’, but I would like to call myself ‘a fighter’.
If you look at the background of the practice of FGM, it’s done by family members, grandmother or mother – someone you trust, who will take you to a place, where you will have the most horrible pain in your life, the most horrible situation in your life. So, trust issues can be one of the psychological impacts of FGM.
I was done when I was six years old and I was with my little sister, she was only one year old. And I did carry the guilt because, for me, my sister shouldn’t have had that done. It was performed on both of us because I was in the process of going away to France. So it was not planned for her at this time – they just did that because I was the one that was going. They just thought, ‘oh, let’s do both of them together’. So I did have the guilt for a long time for my sister because I thought it was my fault.
I developed a clinic – I called the Hope Clinic – to offer holistic care to the women and their family. We work with the ladies and we’ve a project, we’ve a plan for this lady in particular, like very individual care. But it’s also education and prevention because when you have to go for the care, I think it’s too late. So education and prevention is more important. We don’t want anybody to go through FGM.
Albert: For women who have had type 3 FGM – the most severe type – there is a procedure called de-infibulation or ‘opening’ really. We actually cut open the anterior scar, so that we reveal the vaginal opening and the urine hole underneath the scar tissue. And then we stitch the edges of that opening to stop that fusing back together. Sometimes historically, this was called ‘a reversal’ but we try not to use that term because you can’t put back what has been taken away. So for the women with type 3, there is actually a physical procedure that can sometimes be done. Sometimes it’s not possible to do it, so for women where it’s more complicated, for example, where they have a cyst as well as their type 3, or sometimes where the scar tissue has fused with the urinary meatus [opening], it makes it very difficult to de-infibulate. So for some women we can’t, but this opening de-infibulation procedure is actually quite a minor procedure and can be done under local anaesthetic in an outpatient setting.
We had a woman recently who’d been closed for nearly 40 years and she was actually exclaiming loudly with delight that she was finally open [laughs]. Other women who’ve had several children, who’ve been what we call ‘re-infibulated’, or closed, between children and then, again, who’ve come to see us because they want opening.
For those women who have had other types of FGM, there isn’t actually a physical procedure we can do. Really, they need a lot of counselling and psychological support. We had a woman recently –a young woman – who came to see us, who wanted to know what type she had. When I had a look, I explained to her that she had had type 1 and I explained that we couldn’t put anything back that had been taken away – she had had some of her clitoral hood removed and her clitoris removed. And she was terribly, terribly upset. She said ‘I want you to make me normal again like everyone else, I want you to put back what they took away.’ And she was really distraught as she was wanting something we couldn’t provide for her.
Nkoyo: I made a commitment that I would not dare to sit and watch any of my nieces go through what I went through. So I started talking to different family members and, only last year, my mother, sisters and brother made a commitment. And it took a lot of time of me, picking up the phone and just excusing myself and saying ‘I’m going to talk about something we normally don’t talk comfortably about’. And I had – this was actually my brother – because I said I wanted to him to know what was done to me and what I’m living with. And I said ‘I want you to tell me if you want your daughter to go through that.’ And when I explained everything, he said ‘I will never let that happen. And if I know of anyone who is willing to do that, I will take a step forward.’
So for me, I’ve managed to deal with the psychological part of that by helping others. So the Mojatu Foundation is a not-for-profit organisation. We are based in Nottingham and we mainly work with African and Caribbean communities. We produce six issues of our community magazine called Mojatu and we use it to raise awareness of issues affecting African and Caribbean communities.
The most important thing is to actually help people understand where the help and support is. So what I’ve been doing personally is going round and talking to survivors and encourage the women that have gone through FGM to seek medical support. And that will not only help their health condition but it will also help with data collection, to understand the magnitude of the problem locally and also nationally, so that this can be managed in a much better way. But we need to have coordinated efforts from the police, from the city council, from the communities and also engage the survivors.
And now we have a Nottingham FGM steering group. And I’m part of the board as a community representative. And I think this is so powerful, bringing all these people together and have everybody’s voice. And, for me, what I’ve been trying to do is to inspire the survivors to know that it’s actually ok to talk about what happened to them and it’s ok to share with other people, because that’s the only way people can connect with what happened and also take steps forward to support girls. And, for the vast majority of the staff I’ve been working with, they say it’s been very empowering for them to feel they are part of this decision making process on how FGM can be tackled. And for me, I strongly believe that they are a powerful force in helping themselves to deal with the pain of what happened and all the consequences and to protect our girls.
Evans: That was FGM survivor, Valentine Nkoyo. For more information on the Mojatu Foundation go to her website valentinenkoyo.com. And ‘Nkoyo’ is spelt ‘N’ ‘K’ ‘O’ ‘Y’ ‘O’. Other organisations mentioned are The Hope Clinic and their website is fgmhopeclinic.co.uk and there’s a comprehensive list of FGM clinics and resources at forwarduk.org.uk. All these links are on Pain Concern’s website from where you can download this and every edition of Airing Pain as well as transcripts and further information on FGM and other pain-related topics. You can read about FGM in this month’s edition 62 of Pain Matters magazine and, as I say, all these details are available on Pain Concern’s website painconcern.org.uk.
And I’ll just remind you that whilst we at Pain Concern believe that the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your healthcare professional on any matter relating to your health and wellbeing. He or she is only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.
Albert: I feel very positive, actually, that a lot of the women we see in our clinics and particularly the women who have gone through years of pain themselves, have absolutely no intention of doing their daughters themselves and, in fact, feel very strongly about not doing their daughters and other family members. I think that women are being educated about the health complications of FGM and really now understand the link between the two.
I think, historically, you can imagine if a woman wasn’t educated about her anatomy, didn’t know anything about biology and everybody else is the same as her, they wouldn’t even make the connection between the FGM and the physical pain she is having. And I think now that women who are being educated in this country and are seeing their children going through the education system… I think it also to do with equality and higher expectations are really against the practice and men as well – we really do see families that understand that FGM is a bad thing.
Now, of course, I mustn’t be naïve because I’m sure there are small pockets where there are people who still want to go ahead with the practice. And my concern is that sometimes they may practice a less severe type of FGM, because they believe this is a cultural tradition that we need to continue and if we do a less severe type, that’s ok. So we do also spend a lot of time explaining to the women that even the least severe type, will have a really bad psychological impact and that they understand that’s a human rights violation as well.
Nkoyo: I am very hopeful that we can actually end FGM in a generation. I was the last girl in my family and I made it a priority that I will not stand and see anybody in my family go through it, so four of my nieces were saved last year from going through FGM. A lot of work is still needed and I know there are fantastic people out there, someone like Lynn Featherstone [former Liberal Democrat MP] has been very supportive of the campaign and doctors… there is Dr Comfort Momoh, there is Forward, there is Mojatu Foundation… all the work we’re doing to raise awareness… It’s not going to happen tomorrow, it’s a gradual process, but we will be able to tackle FGM and it’s everybody’s business to look after our girls.
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Persistent pain and the fight to end female genital mutilation
[Tafadhali bofya hapa ili kusoma nukuu ya nakala ya programu hii iliyofasiriwa kwa Kiswahili.]
This edition has been funded by a grant from Rosa: The UK fund for women and girls
Over 100,000 women in the UK have been affected by female genital mutilation (FGM) with devastating long-term consequences including persistent pain. Janet Graves hears from FGM survivors and the healthcare professionals treating them about this culturally-embedded practice and how to uproot it.
Hana Gilbremedhen and Valentine Nkoyo speak about the impact being cut as children has had on their psychological and physical health as well as their relationships. Nkoyo also explains how her Mojato Foundation is working to mobilise opposition to FGM from within the communities affected.
Gilbremedhen’s experience of undiagnosed chronic pain after FGM highlights the lack of knowledge among healthcare professionals. Clinics with experience in seeing women with FGM are vital, says Specialist Midwife Juliet Albert, if they are to get the care they need. Midwife, ‘fighter’ against FGM and founder of the Hope Clinic Aïssa Eden shares her story and stresses the importance of education in ensuring the safety of the next generation.
Issues covered in this programme include: FGM: female genital mutilation, women’s pain, women and girls, pelvic pain, urogenital pain, trauma, PTSD, mental health, childbirth, pregnancy, menstruation and periods.
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Movement as medicine and putting pain management centre stage
To listen to this programme, please click here.
Make sure you stand up and do a few stretches after listening to this episode of Airing Pain. ‘Movement is medicine’ for people in pain, says consultant physiotherapist Eve Jenner. But it’s about more than just exercise – physiotherapists can help people understand pain, know the difference between ‘hurt and harm’ and get a better night’s sleep.
Understanding pain matters for doctors and public health officials too, argues pioneer of pain management services Professor Michael Bond. It’s not just political correctness to look at pain as a problem in itself, it’s a question of biology: changes in the spinal cord make pain persist.
Getting that message across could be a matter of life and death. Research suggests that delays in the diagnosis and treatment of persistent pain can reduce life expectancy, Dr Manohar Sharma says. He explains why working as a team of different specialists, including the person in pain, is crucial for making the complex spinal interventions he specialises in succeed.
Issues covered in this programme include: Stretching, activity, exercise, physiotherapy, sleep, insomnia, spinal intervention, pain as a condition in its own right, policy, surgery, educating health professionals and the multidisciplinary approach.
Paul Evans: You’re listening to Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and healthcare professionals. I’m Paul Evans and this edition’s been funded by a grant from the Hospital Saturday Fund.
Is chronic pain a condition in its own right or is it a by-product – for want of a better word – of other conditions? Is it important to make these distinctions? Sir Michael Bond is a retired professor of psychological medicine. He’s been an influential voice on the international stage in arguing that pain should be classified as a condition in its own right.
Sir Michael Bond: Until very recent times everybody, doctors included, regarded pain as a symptom of some disorder or other, one organ or an injury, or whatever. Pain is just a symptom. And it’s extremely difficult to convince people that you may have an injury that recovers but you’re left with persistent pain, although there is now no tissue damage evident.
But what we do know, from neuroscience, is that if pain is present for a certain period of time, in some people, there will be changes in the cells in the spinal cord that are permanent. So although the tissues that were originally involved are not responding to injury anymore, the cells in the spinal cord are behaving as though they were. So we have pain as an illness in its own right, it’s in fact a consequence of channels through which noxious stimuli pass not recovering.
Evans: That’s interesting because I’ve been aware of making this thing pain as a condition in its own right, but I thought that was a political act to get it taken more seriously, but you’re saying that the injury has changed the body in a certain way.
Bond: Indeed, that does happen.
Evans: What difference does that make?
Bond: Well it means, generally speaking, that the doctor or doctors who examine the person, who are not aware of this, believe the patient is faking it, or for some reason or other complaining of something that isn’t really genuine: ‘It’s not genuine. There’s nothing wrong. How could it be genuine?’ And yet, it is genuine, but the reason is because the damage is elsewhere and those who are not aware of these things don’t know that. So that’s the reason, I think.
Evans: But if you do know that and if other people know that, and if it’s accepted, then why is there an argument?
Bond: Well there isn’t the same argument now that there was, when people said pain was just a symptom. It took us a long time to persuade WHO (World Health Organisation) that pain could be a disorder in its own right. And it’s only in 2008, I think, that the Scottish Government accepted that pain is a disorder in its own right. And even more recently in England. So accepting that pain can be a disorder in its own right is very new in the British Isles, it doesn’t go much further back than that outside the British Isles, so it’s a concept which probably hasn’t percolated through to quite a lot of the community yet.
Evans: The implications, I guess, of all of us with persistent pain now having a disease could be quite enormous.
Bond: I’m not sure it would be called a disease: it’s a dysfunction of part of the nervous system, but it’s not a disease in the sense of an infection, or a direct injury; it’s an alteration of function, that’s brought about by a stream of traffic which has now ceased. So you’ve got a differently functioning spinal cord than you had before this event occurred, but it’s not a disease: we would regard it as an alteration in function that gives rise to this experience called pain.
Evans: For people living with pain that’s all semantics [Bond: yes], disease or dysfunction.
Bond: Yes, well what I used to say to people was: ‘your original injury, the actual site is no longer a site of damage, but things have changed in your nervous system such that you continue to feel pain.’
Evans: Since it’s been recognised as a condition in its own right, what difference has that made?
Bond: I think perhaps the difference is that the government now accepts that that is one of the causes of pain. And I suppose if it comes down to costs, it can be costed, as you might cost a broken leg, you know, this is the value we attach to that; whereas before we didn’t attach any value to it because we didn’t believe it existed in that form. I don’t know.
Evans: I suppose the cynic might say – and I hope I’m not a cynic – but the fact that there is a cost to pain may have been one of the barriers for having it recognised as a condition in its own right.
Bond: Well, that’s a subtle point – I don’t know [laughter]. You may be right. It certainly wouldn’t have been the case at WHO: I think they just said ‘no it can’t be true: it’s a symptom, it’s always a symptom’. There was a discourse going on between IASP and WHO for quite a number of years about this topic, and…
Evans: IASP is the International Association for the Study of Pain.
Bond: That’s right, yes, that was founded in 1973. Whereas in Scotland the formation of groups of people who are interested in pain and want to make changes in the conditions for pain patients is a much newer development. I mean there have been pain clinics in Scotland… I remember going to a pain group meeting back in the late 1960s. I had a pain service, an in-patient, pain rehab service in the 1980s in Glasgow, but there wasn’t a nationwide body that pulled things together. The North British Pain Association came along in 1988 – that was Scotland and Northern England – and that did something to begin to pull things together. And it’s in more recent times – Pain Concern came along, later still – that there’s a national movement really, to give far better services to patients in pain in Scotland.
Evans: But you were a pioneer in pain management services…
Bonds: We had the first in-patient unit for rehabilitating people with chronic pain, back in the early eighties – that lasted for about ten years. So, yes we were right in at the very beginning, but at that time there wasn’t anything happening elsewhere in Scotland. There were other pain clinics, out-patient clinics, but no in-patient facility. And the curious thing is that the pain rehab unit was on a psychiatric ward in a general hospital. That was simply because of my position in the system, but it was regarded as a slight oddity, to have a pain rehab unit in a psychiatric ward.
Evans: But that was very forward thinking. People might not have seen it, people might have judged it as pain patients are psychiatric cases, but in today’s thinking it must have been very forward thinking.
Bond: Well I think the point was I didn’t see them as psychiatric cases: those were the only beds I had access to. They didn’t, for the most part, didn’t have any form of mental illness, they had behavioural problems, they had chronic pain. There were three groups, really: one group had pain which followed surgery of one kind or another and they hadn’t come to terms with it, they just couldn’t cope with it – we treated them mostly successfully.
The second group did have a psychiatric disorder – usually a depressive illness – and treating their depressive illness got rid of their pain disorder. I mean 40 per cent of people with depressive illness have pain as a symptom of it and we had people in whom the pain was far more obvious than the depression, so their doctors were treating them for pain when in fact what was needed was treatment for depression.
And then the third group were people who had long-standing chronic pain, had seen every doctor under the sun, none of them had been able to do anything for them, or explain what it was they had and they were very resistant to treatment of any description. Oh, and the fourth group were people who were habituated or addicted to powerful drugs, mostly dihydrocodeine, df118; we had a detox programme for them which was generally very successful too.
Evans: It seems obvious to me now – I’m not an expert, I’m not a professional, I’m a patient – but it seems obvious all those people you’re talking about should have been treated, as you were treating them, with a psychological bent. And that’s exactly what you were doing.
Bond: That’s what we were providing, yes. Again it comes back to the problem of the education of doctors. We know that medical undergraduates even now get very little instruction in the nature of pain and its management, although it’s one of the commonest symptoms that will be presented to them.
Now, I may be demeaning them, but for them to make a decision to send a person directly to someone like me I think would be a step too far. They would almost certainly send them to a physician or a surgeon in the first instance and they, after investigation, would send them to me, sometimes with a cryptic note and sometimes with no note at all and the patient saying, ‘well, they haven’t told me what’s wrong with me, they said I should come and see you.’ The system wasn’t geared to thinking in those terms, given that mine was the only clinic, or in-patient facility, perhaps it wasn’t unexpected that they didn’t think firstly of sending a patient to see me. Nowadays they would.
Evans: Thirty years on since you had your ward, are you pleased with the progress pain management has taken?
Bond: In general terms yes, I think the British Pain Society, the North British Pain Association, the pain networks in Scotland in recent years have done a great deal to improve the lot of people who have particularly acute or chronic pain. And I am pleased in the sense that, it’s taken time but things have developed in the right direction, yes.
Evans: That was Professor Sir Michael Bond.
Well, staying with the pioneers or torchbearers for the management of chronic pain, the Walton Centre in Liverpool has been at the forefront in the battle against chronic pain since the 1960s. It’s recognised for its expertise, both nationally and internationally. Its clinical director of pain medicine is Dr Manohar Sharma, who shared some of his expertise on working within a multidisciplinary team at the British Pain Society 2014 Annual Scientific Meeting.
Dr Manohar Sharma: Chronic pain is a very complex field, complex presentation, so we need different specialties, specialists, who are involved in managing these complex pain problems. So, typically, we will have a psychologist, who is trained in pain management issues; we’ll have a physiotherapy specialist; and then we’ll have a pain specialist, who typically may have an anaesthetic background, but they may also be a general surgeon, they may be a spinal surgeon, or a neurosurgeon… So there are different disciplines, they have core skills in their own field but they bring those skills together in a group, so that the patient gets a one-stop shop and they get all opinions in one go.
Evans: Wel,l pain is a bio-psycho-social phenomenon. It seems fairly obvious to me that all those people should get together to talk.
Sharma: Yes, they should get together to talk, but it doesn’t happen as uniform across the board. There are some units in the country who are very good, very well linked, but equally there are other units who haven’t got that system up and running for a variety of reasons.
Evans: So what are you telling the delegates here?
Sharma: We were actually telling the delegates more about patients with chronic pain who really have a very complex chronic pain, meaning that the pain – they may have a spinal pain, they may have had spinal operations and those operations haven’t helped the patient – they are still very disabled and psychologically distressed and financially also very upset, because of the consequences of chronic pain. So their lives are in a misery.
So we have some specialised techniques, complex invasive methods to control pain. But we can’t really introduce those methods just like one person deciding it. These are expensive, invasive treatments, so we need different disciplines, like psychologists, physiotherapists, pain nurses, pain doctors, maybe surgeons, coming together and making sure that the patient has fully understood and they are fully taking part in their management, so they get the best benefit out of it.
Evans: What would be a typical discussion, if there is a typical discussion, in a multidisciplinary team meeting?
Sharma: There are many treatment options for chronic pain patients and they are all fitted around patients’ expectations, what they can or cannot do. Some patients maybe, for example, need a spinal implant to control the pain. They may not have many other issues, psychological or behavioural issues, they may have a very small localised area of pain and if they have a very good understanding of what their pain problem is and how it can be treated, they may go straight away, they may just need an implant. But they still need to be seen by psychologists and physiotherapists and nurses, to make sure that they have understood what they’re getting into, so that they are able to manage it afterward.
On the other hand, the same patient, but different set of problems, they may be psychologically quite disturbed, affected by it, they’re kind of…they may have lost the track of it and it’s overwhelming for them. In those patients, if you just do the implant it actually may be counterproductive and might make the situation worse. So they need psychological treatments first, to optimise… so that’s the balance we have to strike: we have to decide which way we go with the same patient.
Evans: How important is it for the patient to know that they are being discussed and taken care of by this quite large team of different disciplines?
Sharma: I think it’s vital. I think it gives them a sense of confidence and sense that they are in a system, that not one person can just say yes and no and just make a decision which could go either way. I think when that decision is taken within a large team it’s a thorough and vigorous process and we all talk to each other in a discipline, making sure that we have ruled out any other possibilities, you know, which could be applied to make them better, before going to complex treatments which sometimes can have complications. So I think it’s vital, I think it’s important: we have less resources; we have to make sure we apply those resources where they are most likely to give us benefit. So I think it’s important from both perspectives, from patient perspective, from commissioner perspective, that we have the best possible decision from all perspectives.
Evans: But from a patient perspective – and I am a patient – to feel that you are at the focus of everybody’s attention, that you are the centre, rather than just a patient who comes in, has a twelve-minute appointment and leaves believing, ‘well, that’s done, that’s sorted, one man is making that decision, I am no part of it’ – psychologically that must be very valuable for him.
Sharma: Absolutely, I think typically in our hospital in Liverpool when a patient comes for a multidisciplinary assessment we spend at least an hour and a half or even two hours for one patient: they see a psychologist, they see a specialist physiotherapist, they see specialist nurses and that process takes two hours. But that doesn’t finish it: they then write their summary report, which then goes to their consultant in charge, who must have referred this patient into that process. And then the consultant will decide what to do, and they will decide it based on their reports.
But also we will again meet the patient in the clinic and spend twenty minutes or so or more. And then we’ll put everything together. So there is a lot of attention: it’s patient centred and the patient has an equal opportunity to come back and say ‘I don’t think I can do that’. So now how can we make progress? So we have to consider what they can and cannot do. So I think it’s like a jigsaw…
Evans: And the patient is part of the team?
Sharma: Yes, they are part of the team. And it’s an evolving process when they are assessed by the team, and if there is an issue that the patient tells us that hasn’t come across to the consultant in the initial consultation then that issue is taken further and then we try to see how it can be optimised, for example, some patients the team will say, you shouldn’t have an implant now, but maybe you go on this rehabilitation course. And that may be better at this stage, but it’s a very delicate… it’s an important discussion, but it’s introduced in a way that patients are able to understand the reasoning behind it and take part in it and be fully involved.
Evans: Shared decision making.
Sharma: Absolutely, absolutely spot on, yeah.
Evans: At what stage do people with pain get to be referred to your multidisciplinary team?
Sharma: It varies widely. In the UK I think there’s huge variation. Typically they wouldn’t come to the pain service initially; for example, some patients with acute sciatica may go to orthopaedics or a spinal surgery – they have an operation. And then they are told typically that they give it about six to nine months after surgery to settle. So typically in a pain clinic, if that person doesn’t do well after surgery, they may come in the pain clinic maybe a year after onset of chronic pain. And we will consider that to be early.
Evans: It seems to me as a patient that a service like you offer in Liverpool is treated as a last resort when, perhaps – tell me if I’m wrong – the earlier a patient sees you in his pain journey, the better the chance of management?
Sharma: You’re absolutely right: earlier treatment of chronic pain makes it less intractable, makes it also more likely to respond to treatments. And there is now a good evidence base being published and made available generally, that, chronic pain patients, if they’re not treated early and well in time, it has an impact on their overall lifespan. And this is quite a strong statement to make. But it’s not a simple thing – ‘chronic pain, we can let it go’ – it has a huge impact on their overall health and the longevity of life. So this is quite a serious discussion point, that access to early treatment, appropriate treatments, is vital.
Evans: So what could we do about it, is education the answer?
Sharma: I think the British Pain Society has worked very hard and worked very hard with the Map of Medicine to devise pain pathways and they have many sorts of pathways now for different pain conditions; for example, spinal pain or back pain is a huge problem and they have now devised extensive pathways as a guidance for primary care, secondary care and specialist pain management centres, as to how, typically, a patient with that condition should be managed. So these are all available on the Map of Medicine, which gives guidance to commissioners, to family care physicians and even the general public should be able to access those pathways.
So, guidance is out there, it’s just being aware of what is the guidance and then commissioners buying into and implementing good practice guidance. And these are evidence-based guidance: a large working party has contributed to the pain pathways. So information is out there, it’s just being more aware and uptake and implementation of those pathways by commissioners.
Evans: The Walton Centre, where you are, is a gold standard in pain management…
Sharma: Absolutely, the reason for this is we have different disciplines working together: neurosurgery, spinal surgery, psychology, palliative medicine, gynaecology and pain consultants, physiotherapy… all working together. And this is unique, a model where we are able to work so closely together for the benefit of the patient. This has taken about 40 years to develop this collaboration, that’s why it’s unique. And it’s not something which can be purchased: it’s the different disciplines who have strong passion, common passion, a common goal, that they want to treat, for example, cancer pain, very well, so different disciplines come together and provide rapid access to diagnosis, rapid treatment and aftercare. So I think that passion and motivation in the team, that develops with their confidence in the treatment offered and the outcome data for patient management… that gives more confidence to the team. That’s why it takes thirty, forty years to come together and know each other and how they come together to make the best result for the patient.
Evans: That word passion speaks volumes.
Sharma: Absolutely, I think we have members of my team and it doesn’t matter whether it’s a Friday, or Saturday, or Sunday, I can pick up a phone and if this person needs a neurosurgical operation to manage a cancer pain, my colleagues are so passionate they’ll come on a Sunday to come and see a patient, then operate on Sunday or Monday. So that’s how we feel for cancer pain, or any other chronic pain management, we take it very seriously. These patients need to be given quick access and quick treatment if that is what is appropriate for the patient.
Evans: That was Clinical Director of Pain Medicine at the Walton Centre, Liverpool, Doctor Manohar Sharma.
I’ll just remind you of Pain Concern’s usual words of caution, that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you, your circumstances and therefore the appropriate action to take on your behalf.
Now, one of the members of the multidisciplinary team approach to pain management will be a physiotherapist. Eve Jenner was a consultant physiotherapist in the chronic pain service in Birmingham. Now she works independently of the NHS and is an advisor to the Chartered Society of Physiotherapy.
Eve Jenner: When you’re looking at people who’ve got long term pain it’s important that the approach is slightly different from what we sometimes call ‘the medical model’, or ‘the find it and fix it model’. As you know, unfortunately for chronic pain, with people who have long term pain, there often isn’t a medical or a physiotherapy solution to take away that pain. So physiotherapists who work with people in chronic pain need to learn the skills and strategies to help people learn to understand their pain and learn what they can do to manage their pain effectively so they can get on with their lives.
Evans: You see most people will see a physio as somebody who inflicts pain on somebody.
Jenner: Yes, unfortunately that has sometimes been people’s experience, but what we’re really interested more in doing is helping people regain their fitness and their activity levels, so that they can do the things they enjoy. That might be by giving specific exercises, but often it’s about helping people understand how to manage their activities and manage things like sleep and also things like breathing and relaxation, so that they are able to keep their pain under control so that they can get on with their lives.
Evans: So how would you help somebody manage their sleep?
Jenner: Well, sleep’s really interesting because there are lots of things that we know that can disturb people’s sleep and people often think that it’s the pain that’s the main problem – and it is sometimes – but what we also know is there are lots of things people can do themselves to help their quality of sleep. And that might be things like making sure they’ve got the right sort of mattress and bedding to keep them at a comfortable temperature and in the best position. To understand that their environment is really important, so we know, for example, that having things like televisions and mobile phones or computers in bedrooms is really detrimental to sleep.
And we also know that taking some activity during the day can help people sleep. And not taking cat naps – often people with chronic pain, they have poor sleep during the night and they try to catch up during the day, although that can seem like a good plan, what it can mean is that you use up your need for sleep during the day and then you find yourself awake at two o’clock in the morning.
Evans: But you can work yourself up into quite a sweat by thinking about going to bed.
Jenner: Absolutely, and that’s one of the problems because the brain is very good at associating things and if beds become a really uncomfortable and unpleasant place, then just thinking about going to bed can make sleep seem a really long way away. But there are techniques people can do to help address that.
Evans: From what you’re saying it seems to me that you’re working as much with the mind as the body.
Jenner: Well, I think it’s really important that people understand the different between hurt and harm, because often when people start to exercise or start to move they do get a few aches and pains and that can really cause a lot of concern. And physiotherapists can be very good at helping people to get the right level of activity for them and to understand that some soreness after exercise doesn’t mean they’ve done any harm, but is just the normal system of when you start doing an activity after some time.
Evans: How would a patient get referred to a specialist physiotherapist for chronic pain?
Jenner: Most people get referred to physiotherapy through their GP and there are physiotherapists working in all areas who have experience in chronic pain. Some people can self-refer to physio, but usually if you have a problem with long term pain you may need help with a multidisciplinary team, with doctors and psychologists as well as physios, and in that case you’d usually go through your GP or a specialist pain consultant. But lots of physiotherapists in the community now are having experience with managing pain and can give people advice and support to help them learn to self manage their problem. And there are lots of resources out there as well, things like the Pain Toolkit and the Pain Management Plan, which is a development of the Pain Toolkit, which is to help people who need a bit more support and encouragement to learn how to manage their pain.
Evans: But should GPs and commissioners really be looking to spend more money on physiotherapists?
Jenner: I absolutely think they should, yes, certainly we know that in many parts of the country there are still long waits for specialist physiotherapy and for people to have specialist help for their long term pain problem.
Evans: That’s physiotherapist Eve Jenner.
Don’t forget that you can download all the previous editions of Airing Pain or obtain CD copies direct from Pain Concern. If you’d like to put a question to Pain Concern’s panel of experts, or just make a comment about these programmes then please do so via our blog, message board, email, facebook, twitter or pen and paper. All the contact details are at our website, which is painconcern.org.uk.
Last words to Eve Jenner:
Jenner: Movement is medicine for people with chronic pain, so it’s a really good idea to get into the habit of moving frequently because our bodies generally don’t like to be in one position for too long. So even if you’re sitting at a desk or watching television, it’s a really good idea to remember to get up and stretch every twenty to thirty minutes and just change your position, give your body a bit of a break from sitting down.
Evans: You’re looking at my static position [laughter].
Jenner: I’m looking at your static position. I think it’s time for a stretch.
Evans: Thank you very much.
Contributors:
Pain Concern’s research study, which has identified a range of common barriers which can make the facilitation and adoption of self-management of chronic pain more difficult, has been awarded top poster at North British Pain Association Spring Conference 2015 and one of top 5 research posters at the British Pain Society Annual Scientific Meeting 2015
The study focused on the participants’ experiences of primary care and data was gathered from people living with chronic pain, carers and a wide range of primary care healthcare professionals. The study highlighted a range of commonly occurring barriers including those formed during one-to-one interactions between patient and healthcare professionals and those imposed by the constraints of the wider NHS organisation. The often lengthy and inconclusive patient journey towards diagnosis and treatment, the emotional impact of pain, the need for ongoing support and a purely medical approach were also highlighted as potential opportunities for barriers to form.
The full report and findings can be found here.
Look out for Pain Concern’s series of new online resources for patients to help understand & manage their pain better from an earlier stage in primary care. Coming soon!
Movement as medicine and putting pain management centre stage
This edition has been funded by a grant from The Hospital Saturday Fund.
Make sure you stand up and do a few stretches after listening to this episode of Airing Pain. ‘Movement is medicine’ for people in pain, says consultant physiotherapist Eve Jenner. But it’s about more than just exercise – physiotherapists can help people understand pain, know the difference between ‘hurt and harm’ and get a better night’s sleep.
Understanding pain matters for doctors and public health officials too, argues pioneer of pain management services Professor Michael Bond. It’s not just political correctness to look at pain as a problem in itself; it’s a question of biology. Changes in the spinal cord make pain persist.
Getting the message across could be a matter of life and death. Research suggests that delays in the diagnosis and treatment of persistent pain can reduce life expectancy, Dr Manohar Sharma says. He explains why working as a team of different specialists, including the person in pain, is crucial for making the complex spinal interventions he specialises in succeed.
Issues covered in this programme include: Stretching, activity, exercise, physiotherapy, sleep, insomnia, spinal intervention, pain as a condition in its own right, policy, surgery, educating health professionals and the multidisciplinary approach.
Contributors:
