informed choice? giving women control of their healthcare...women deserve every opportunity to take...

ALL-PARTY PARLIAMENTARY GROUP ON WOMEN’S HEALTH

This is not an official publication of the House of Commons or the House of Lords. It has not been approved by either House or its committees. All-Party ParliamentaryGroups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in this Report are those of the group.

Informed Choice?Giving womencontrol of theirhealthcare

Informed Choice? Giving women control of their healthcare

Acknowledgements

De Montfort University

Patient Groups: FEmISA, Endometriosis UK, The Lake Foundation

PB Consulting: Melissa Barnett, Natasha Silkin

Individuals: Speakers at the oral evidence session - Dr Anne Deans, Anne Little, Carol Pearson

APPG Membership:

Chair: Paula Sherriff MP

Vice-Chairs: Paul Scully MP, Flick Drummond MP and Baroness Jenkin of Kennington

Members: Dawn Butler MP, Ruth Cadbury MP, Thangam Debbonaire MP, Colleen Fletcher MP, Khalid Mahmood MP, Caroline Nokes MP, Christina Rees MP Tommy Sheppard MP

PB Consulting is paid by grants from Gedeon Richter and Boston Scientific to act as the group's secretariat.


Contents

4 Executive Summary

6 Welcome and introduction from the Chair of the Women’s Health APPG – Paula Sherriff MP

7 Group Aim

8 The Report Plan

9 Overview and Impact of Conditions

14 The Patient Survey

24 Scale of the problem – Data from NHS Trusts

27 Combatting barriers

40 Addressing the barriers

41 Recommendations

43 Best practice patient case studies

46 Conclusion

47 Relevant guidelines

48 Appendix

49 Bibliography and Footnotes

50 Abbreviations


Executive Summary

Introduction

The All-Party ParliamentaryGroup on Women’s Health hasfound that across the countrywomen are not being treatedappropriately when it comes totheir physical, mental andgynaecological health.

The group surveyed over 2,600women and sent an FOI tohospital Trusts and foundunacceptable treatment forwomen with fibroids andendometriosis.

The group found that womenare not getting the rightdiagnosis and informationabout treatments making itextremely difficult for them todecide the best care forthemselves.

If women cannot even get theright diagnosis and informationabout treatments, how can theypossible decide what is the bestcare for themselves? Womendeserve every opportunity totake control of their ownhealthcare and this group isstriving to empower women sothey have this potential.

The survey carried out for this reportidentified key issues in regards to:

1) Attitudes

42% of women said that they werenot treated with dignity and respect.

40% of women with endometriosisneeded 10 GP appointments ormore before being referred.

39% of women sought a secondopinion.

These statistics show that women are all toooften dismissed by healthcare professionalswhen discussing their symptoms and choices.

2) Information and Choice

62% of women were not satisfiedwith the information that theyreceived about treatment options.

67% of women said they got most oftheir information from the internet.

Nearly 50% of women with fibroidsand endometriosis were not toldabout the short term or long termcomplications from their treatment.

Only 16% of NHS Trusts providewomen with written informationabout Heavy Menstrual Bleedingand pelvic pain.

The fact that women feel the need to seekfurther advice and they are not satisfied withthe information that professionals give themshows that more needs to be done toempower women so they can make thesechoices. Women should be given the fullrange of information, in a written format, sothey are able to make an informed choice.


Recommendations

1) Information resources – women need to be offeredwritten information on gynaecological issues with afull range of information about the condition andwhat their options are, and available in a variety offormats. These leaflets should be endorsed by therelevant clinical bodies and patient groups and thesame generic leaflets should be made available at allcentres, Trusts and gynaecology clinics. GPs,secondary care clinicians and nurses should provideor signpost women to high quality information andresources about endometriosis and fibroids, theirimpact and treatment options.

2) Endorsed best practice pathway – this would meanthat women would be streamlined more quickly intothe right care, saving costs from unplannedadmissions and ensuring women get access to alltreatments. This should be agreed by the relevantRoyal Colleges and patient groups.

3) Wider awareness of menstrual health with the generalpublic and all healthcare professionals, as well aseducation at schools on these issues – far too oftenwomen put up with symptoms and incredible painbecause they are not aware of what is ‘normal’ andthey feel stigmatised by talking about ‘women’sproblems’. Education modules should be included atthe RCGP and RCOG for recognising and treatingfibroids and endometriosis.

4) Encourage multi-disciplinary team working at Trusts– to ensure access to all treatments for women. Bestpractice pathway should be followed in this regard.

5) Where it exists NICE Guidance should be followed forfibroids and endometriosis and for treatments forthese conditions. These should not be implementedvariably across the country as is currently thesituation.

3) Costs and short termthinking

86% of Trusts couldnot provideinformation as to howmany diagnostic testswere needed forendometriosis andfibroids diagnoses.

40% of those surveyedneeded 10 GPappointments or morebefore being referredto the specialist.

12% of womensurveyed with fibroidstook 1-2 years fromtheir diagnosis to gettheir treatment.

I am proud to have been Chair of the All-PartyParliamentary Group on Women’s Health sinceJune 2016. We have been campaigning forwomen to have the right to make an informedchoice about their own healthcare and arecalling for women to be empowered.

Women’s healthcare covers a huge arena andaffects everyone, either directly or indirectlythrough someone they love and care about. TheGroup has heard of areas of healthcare wherewomen receive worse outcomes due to a lack ofawareness, such as with stroke, to women whoare painfully affected by conditions such aspolycystic ovary syndrome, prolapse,premenstrual syndrome, women’s healthcancers and many others.

All too often I have heard of women beingmarginalised and side-lined when they try toseek help, dismissed and not taken seriously.This needs to stop. Women have a right to beheard and they deserve to be treated withdignity and respect at all times.

This Group aims to shine a light on little knownconditions that have a huge impact, helping tobring women’s voices to Parliament and tomake a change.

This year the All-Party Parliamentary GroupReport is focusing on highlighting the need forinformed choice for women. We have chosen toshine a spotlight on two conditions which areprevalent amongst women, fibroids andendometriosis.

These conditions arecommon in the population andyet there is a chronic lack of awareness, oftenby healthcare professionals at all levels andfrequently in the general public. It is vital thatwe talk about these conditions, that ‘women’sproblems’ are not stigmatised and we learn totalk openly around what is normal pain andwhat is not. The more we understandconditions and their symptoms, the range oftreatments and what can be done, the morewomen can get the help they need and beoffered the choices they deserve so they canmake the best decision for themselves.

I was shocked by the stories that I have heardwhilst we conducted this inquiry and I amconvinced that more can be done easily tochange vast numbers of lives for the better.

I am committed to working with myParliamentary colleagues and others toempower women, to make sure their voices areheard and represented at Parliament, and aboveall to campaign for change so that women canget the care and choices that they deserve.

Paula Sherriff MPMember of Parliament for DewsburyShadow Minister (Equalities Office) (Women and Equalities)

Welcome and introduction from the Chair of the Women’s Health APPG – Paula Sherriff MP

Informed Choice?

Group Aim

The Group aims to empower women to ensure that they can make an informed choice about the best treatment for them and that they are treated with

dignity and respect.



The Report Plan

The group has conducted this inquiry as wewant to focus on issues that affect hugenumbers of women across the UK. We arelooking at two conditions that are extremelycommon, yet have little awareness by both thegeneral public and with healthcareprofessionals. These conditions have beenchosen because we feel that there is progress tobe made in empowering women to ensure thatthey are able to make informed decisions abouttheir own care.

This report hopes to shine a spotlight onfibroids and endometriosis, to raise awarenessof these conditions with healthcareprofessionals and the general public, and tobring about a positive change to ensure womencan access better diagnosis and treatment

options across the country. The Group thinksthat there are lessons to be learnt that can bereplicated across a whole range of women’shealth conditions, including polycystic ovarysyndrome, prolapse and others.

The Group has called for written evidence froma range of influential stakeholders regarding thecurrent state of the NHS for these conditions,and what recommendations can be takenforwards. The Group has also held an oralevidence session to learn from patients andhealthcare professionals about theirexperiences and what best practice might looklike. Furthermore the Group opened an onlinepatient survey and sent out a Freedom ofInformation request to NHS Trusts to gainadditional information.


Overview and Impact of Conditions

Both fibroids and endometriosis arewidespread amongst women, theyboth have symptoms identified withpelvic pain, unusual periods andmenstruation issues, and aregynaecological issues. The Groupbelieves that it is important to open amore widespread dialogue on theseconditions and the whole patientpathway; from presentation todiagnosis to treatment and follow up.

Fibroids and endometriosis are two ofthe most prevalent conditions thataffect women which is why theGroup has chosen to focus on thesetwo conditions.

Fibroids:

Uterine fibroids are benign (non-cancerous)tumours of the uterus or womb. They are themost common tumours found in the humanbody. It is estimated that approximately 20-70%of women have fibroids. Many women neverknow they have them, and whilst fibroids arethought to affect as many as one in three women,many women do not have symptoms1. Fibroidscan cause women extreme pain and symptomsand result in surgery and invasive interventions.

Endometriosis:

Endometriosis is the name given to the conditionwhere cells like the ones in the lining of thewomb (uterus) are found outside the womb in thepelvis, and occasionally in more remote sites ofthe body. During the monthly cycle hormonesstimulate the endometriosis, causing it to grow,then break down and bleed. This internalbleeding can lead to irritation, inflammation,pain, and the formation of scar tissue(adhesions). Endometrial tissue can also befound in the ovary where it can form cysts2.

According to current statistics, endometriosisaffects 1 in 10 women in the United Kingdom3.Endometriosis is the second most commongynaecological condition in the UK4 and canaffect women of reproductive age. Several of thepatients we heard from experienced symptomsat a very young age.

1 http://www.nhs.uk/conditions/Fibroids/Pages/ Introduction.aspx2 Endometriosis UK website 3 Rogers PA, D'Hooghe TM, Fazleabas A, et al.

Priorities for endometriosis research:recommendations from an international consensusworkshop. Reprod Sci 2009;16(4):335-46.)

4 University College London Hospitals. Generalinformation about Endometriosis.

Patient Testimonials

I was diagnosed withendometriosis after my firstyear at university. Thediagnosis process alone washellish. The laser surgerytreatment to the smallamounts of endometriosis thatwas found (‘too small to domuch’, he told me) wasn’t asuccess, and within sixmonths my symptoms startedcoming back. They wereslightly better, though, and Ididn’t want to face dealingwith that system again, so Ijust decided to grin and bearit. Bad idea.

In March last year, my shortdaily cramps started to getlonger and more severe. Ihoped that it was just stressfrom work, that it’d just pass,but it just kept persisting,gradually worsening over thenext couple of months.Management at work wereless than sympathetic, withone manager asking to see myentire medical history after I

took a day off with cripplingperiod pain. In May, I got astomach virus, whichworsened it to one of the mostextreme flares I’ve ever had. Istopped working at the start ofJune, because it hurt tobreathe when standing on theshop floor. I could barely walkacross the hall to thebathroom. I was in utteragony, and because it was apre-existing long termcondition, there was nothingthat A&E could do for mewhen I sat there nearlypassing out from the pain.

I was lucky enough to see abrilliant specialist, wholistened to me and validatedmy pain, and told me thatwe’d find something thatwould help. He sent me for anMRI, which showed adhesionson my left ovary and downmy rectal muscles, as well asin other places – which isexactly where the pain was atits worse. It also

showed adenomyosis. He putme on the waiting list forsurgery at the JR. I still don’thave a surgery date. I’m notsure, since the closure of theHorton and the complexity ofthe surgery due to where mygrowths are, when I will getone. I’m too nervous to calland follow it up – what if Inag, have another surgery,and once again it doesn’t doanything to help?

However, I have had theMirina coil inserted in August,and it’s been magical. I’m stillin daily pain, and sometimesit’s awful, but I have my lifeback a little bit more now.

Case Study:Amy Maidment, 23, diagnosed at 19, from Oxford

Informed Choice?


I was first diagnosed by a scanfollowing some severe pain inmy side. I was told I had afibroid pressing on mybladder. My scan never madeit to the GP though – and theGP told me firmly that‘fibroids don’t cause anyproblems, and there’s nothingyou can do about themanyway.’

I spent the next couple ofyears bouncing between GPs.When my periods becamedebilitating, I spoke to a GPwho told me to takeIbuprofen. I suspect now thatmy GP made no note of thefibroid on my records. Icontinued to be treatedseparately for the varioussymptoms I was experiencing.

I struggled on with thecrippling periods that made itdifficult to work several days amonth, and was exhausted,aneamic, in pain anddepressed.

I eventually got help from anurse practitioner, who gaveme time to speak. She listenedto my range of symptoms andimmediately suggested I had afibroid. She prescribedTranexamic Acid which easedmy periods immediately.

I was finally referred to agynaecologist, who told methat because of the size, andbecause I wanted children, thebest option was Myomectomy,though I was giveninformation leaflets aboutother options.

When I went back to confirmI wanted surgery, I was toldthat I should wait, but later anurse told me it was too largeto sustain a pregnancy, and

suggested asking for a secondopinion. I eventually had asuccessful Myomectomy,removing a single Fibroid20cm x 20cm x 15 cm - severalyears after first diagnosis, anda year after the final diagnosis.Looking back, the hardestthing was getting my GP tolisten to me - and later, one ofthe gynaecologists. I knewnothing about fibroids untiljust before my surgery. Myfibroid left me drained and inconstant pain - you shouldn'thave to fight for treatmentwhen you're that unwell.

Case Study:Sarah Hutchinson

Patient D: This patient was told by her gynaecologistthat the only treatment option was hysterectomy, shewas given no other information and the impact of thisprocedure was never considered. She fought for moreinformation and finally managed to get the fulltreatment options explained to her, and had analternative treatment to hysterectomy.

Fibroids


Patient A: She was told that all her pain and symptomswere in her head and the clinician tried to discharge her.

Patient B: The patient involved had been told so many times thatnothing was wrong with her that she thought she was ‘going mad’.

Patient C: The woman was told at 18 years old to have ahysterectomy and not offered any other solutions, or given anytreatment information. She was able to conceive at a later dateand now has a child. This patient told us about how shepassionately believes in tailoring treatments to individualsbased on their pain and their priorities.

Endometriosis

Patient E: This woman felt that her symptoms were ignoredand she was told to just leave the issue. In this time herfibroids grew and became more symptomatic. When she was finally referred she felt that she had less treatment options than if she has been appropriately diagnosed and referred at an earlier stage.


Other patients:

‘This disease has such an enormous impact on lives, this is notappreciated by healthcare professionals. The impact of a life lived in pain, compounded by difficult side effects of hormonal treatment,infertility etc is simply not understood. Women feel incredibly alone and unsupported.’

‘I was dismissed by my GP so many times over so many years with somany symptoms that added up to endometriosis that I started to evendoubt myself. I felt like I was going crazy because no one would take meseriously.’

‘It's a debilitating disease which takes over my life at times. More awareness and understanding is required.’

‘This illness is devastating, it wrecks lives and there is no real cure.’

‘My life is being ruined by this awful condition.’

‘More information available through the internet as no GP orgynaecologist seem to have the time to explain all the facts.’

‘I had to fight every step of the way to get treatment for endometriosis and feel in the end the NHS let me down.’

‘I was disappointed that I have had to go private to get a correct diagnosis and treatment plan.’


The Patient Survey

‘No information given from hospital, have had to find out everything myself.’

‘I read a lot online about what to expect. I knew nothing about fibroids at the time of diagnosis and thehysterectomy was presented as the only option.’

‘I told them that I didn't want that, consistently. They then referred me to a Consultant Radiographer. Thegynaecologist gave me very littleinformation. I looked into it myself,otherwise I wouldn't have known what could be offered.’

‘I was told to either get the operation, or deal with the pain.’

‘I was grossly unprepared for the length of recovery.’

‘I wasn't given any advice or treatment. My condition wasn't even explained to me.’

‘Was never told all the details about treatment options so I had to research myself.’

The WHAPPG opened an internetpatient survey asking for womenwho had suffered from fibroids orendometriosis to share theirexperiences. Over 2,600 womenresponded to this request and wehave built a picture around theirexperiences.

Due to the self-selecting nature ofthis patient survey, the results reflectthe women most interested inresponding, which will have animpact on the results. It is thoughtthat women who demanded a secondmedical option, or researched theirown treatment options, will havebeen more likely to complete thissurvey.

The overall picture that we foundshowed that the patient pathwaycurrent in place, are woefully lackingand are in some cases not followed atall. Women appear to struggle to geta diagnosis with endometriosis, andthen with both fibroids andendometriosis this survey shows thatwomen are rarely told about the fullvariety of treatment options, and areoften pushed towards a treatmentchoice that they might not want,based on their clinician’srecommendation. Some healthcareprofessionals are not aware of certainconditions to a sufficient level, or arenot aware of treatment options.

The group has outlined some offindings from the patient survey overthe next two pages. 2,604 womenresponded over a period of 2 and ahalf months at the start of 2017.


Key findings across both conditions:

62% of women were not satisfied withtheir treatment choice.

These findings are supported by theTOHETI Report and FEmISA 2016report. According to FEmISA, 67% ofTrusts take no measures to ensurewomen are aware of their treatmentoptions and offered choice.

42% of women said that they were nottreated with dignity and respect.

Women deserve to be treated withdignity and respect. Almost 50% of the2,604 people that responded felt thatthey were not treated with dignity andrespect.

67% of women said they first foundinformation out about their conditionfrom the internet.

The Group was shocked by these highstatistics, as it highlights that women arenot getting the information that theydeserve to make an informed choiceabout their health and are being forcedto turn to the internet for solutions.Furthermore, there is little guaranteethat the information provided on theinternet is always clinically accurate.

This Group firmly believes that informedchoice is a patient’s right, and call on allinvolved to ensure that this happens.

Endometriosis figures:

40% of those surveyed needed 10 GPappointments or more before beingreferred to a specialist and 10% ofwomen took 15 years or more to get adiagnosis from when they first went to ahealthcare professional with symptoms.

These figures highlight the struggle thatwomen with endometriosis can face ingetting a diagnosis for their condition.These statistics are truly startling.

25% of women received the wrongdiagnosis.

Endometriosis can be difficult todiagnose as there is no simple test. NICEguidelines on diagnosis should befollowed by all healthcare professionals.

Where and how did you first findinformation on your condition – 68% viathe internet, 41% their gynaecologist,22% from their GP.

It is disappointing that often healthcareprofessionals are not providing womenwith the information that they need anddeserve. Instead women have to do theirown research, which might not alwayshappen, and often they might not findthe right information.

Anecdotal comments and responsesshow that many were told theseproblems were psychological.

‘The first ever GP I saw fobbed me offsaying "periods are painful" - at this point Iwas passing out due to the pain.’

‘I was often made to feel it was all in my


head and that my symptoms were caused bystress and IBS.’

Over 40% of women sought a secondopinion during their diagnosis and

treatment.

60% of women were not satisfied withtheir treatment.

Fibroids figures:

70% of women were told abouthysterectomy, however only 38%received a hysterectomy.

These figures highlight how women arebeing pushed towards having ahysterectomy, often without being toldabout other treatments. This needs tochange as more pharmaceutical and non-surgical interventions become safer andshould be more commonly available.

The hysterectomy figures are muchhigher when compared to the percentageof women who were told about, offeredor had other treatment – 47% of womenwere told about myomectomy, 54% weretold about Uterine Fibroid Embolisation,and few were told about pharmaceuticaloptions.

43% of women were not satisfied withthe information about their treatmentchoice.

This is supported by the TOHETI reportwhich stressed that women felt theylacked a voice.

Over 20% of women sought a secondopinion during their diagnosis andtreatment.

Time to treatment from diagnosis: - 23% took 1-3 months - 20% took 3-6months - 11% took 6-9 months - 7% took 9-12 months - 12% took 1-2 years.

Given that fibroids can increase in sizedramatically some of these waiting timesare alarming.

‘The waiting time was unacceptable givenmy symptoms and I had to pay a lot ofmoney to accelerate my operation.’

34% of women were not satisfied withtheir treatment.

Treatment options

The breakdown of which treatmentswomen were told about, offered andreceived is very interesting.

These findings show that women wereall too often more likely to be offered onetreatment over others, and that sometreatments are much more likely to be

discussed with a patient than others.

The Group believes that all treatmentoptions should be discussed with thepatient to ensure that they can make aninformed choice about their treatmentand they are concerned that this does notappear to be the current situation


Informed Choice - Endometriosis

On being diagnosed with endometriosis, which treatment options were you (a) told about (b) offered and (c) received? Please tick all that apply.

Answer OptionsTold

About Offered Received N/AResponse

Count

Hysterectomy 909 283 152 909 1999

Painkillers/ Pain modifiers 910 916 1395 215 2220

Referal to a pain clinic 316 172 268 1273 1814

TENS machine 224 42 97 1464 1758

Physiotheraphy 138 72 102 1518 1737

Hormonal (Combined oralcontraceptive pill, Mirena Coil,Progestogens, GnRH analogues,Testosterone derivatives, Danazol,Gestrinone (Dimetriose))

896 996 1524 167 2262

Myomectomy 37 8 13 1624 1669

Pain management 510 257 414 1003 1825

Laparoscopic surgery 774 819 1704 174 2217

Oophorectomy 180 103 152 1402 1713

Other e.g. ulipristal acetate 431

answered question 2341

skipped question 26


Informed Choice - Fibroids

On being diagnosed with fibroids, which treatment options were you (a) told about (b) offered and (c) received? Please tick all that apply.

Answer Options ToldAbout

Offered Received N/A ResponseCount

Hysterectomy 143 105 77 13 204

Uterine artery embolisation 78 44 37 42 144

Painkillers/ Pain modifiers 47 43 55 36 128

Referal to a pain clinic 1 0 0 76 77

TENS machine 0 0 0 77 77

Physiotheraphy 2 3 8 70 78

Hormonal (Combined oralcontraceptive pill, Mirena Coil,Progestogens, GnRH analogues,Testosterone derivatives, Danazol,Gestrinone (Dimetriose))

76 65 78 25 160

Myomectomy 58 38 31 46 124

Pain management 13 10 10 61 82

Laparoscopic surgery 33 22 22 47 99

Oophorectomy 21 14 20 63 93

Magnet resonance guided focusultrasound

6 2 4 66 78

Myolysis 1 0 0 72 73

Tranexamic acid - an antifibinolytoc drug used to reduce bleeding

53 50 93 32 151

Other e.g. ulipristal acetate 43


skipped question 4


On being diagnosed with fibroids, which treatment options were you (a) told about (b) offered and (c) received? Please tick all that apply.

400350300250200150100500

Hysterectomy

Uterine artery

embolisation

Painkillers/

Pain modifiers

Referal to a pain clinic

TENS machine

Physiotheraphy

Hormonal

Myomectomy

Pain management

Laparoscopic surgery

Oophorectomy

Magnet resonance

guided focus ultrasound

Myolysis

Tranexamic acid

ToldAbout

Offered

Received

N/A

On being diagnosed with endometriosis, which treatment options were you (a) told about (b) offered and (c) recieved? Please tick all that apply.

4,0003,5003,0002,5002,0001,5001,0005000

Hysterectom

y

Painkillers/

Pain modifiers

Referal to a pain clinic

TENS machine

Physiotheraphy

Hormonal

Myomectomy

Pain management

Laparoscopic surgery

Oophorectomy

ToldAbout

Offered

Received

N/A


Information about treatments and possibleside effects and complications given towomen when offered a treatment.

The Group is concerned by evidenceshown that when offered or pointedtowards a treatment women are often nottold about the full impacts of thetreatment, or given the full picture ofinformation.

Informed Choice - Fibroids

What information were you given about your treatment options? Please select multiple answers if applicable.

Answer OptionsResponsePercent

ResponseCount

Short-term complications 62.60% 119

Longer-term complications 51.60% 98

Short-term side effects 59.50% 113

Longer-term side effects 40.50% 77

Length of hospital stay 73.20% 139

Time to return to work/normal life 75.80% 144

Death rate 18.90% 36

Home nursing required 11.60% 22

Other (please specify) 46


skipped question 37


Anecdotal comments

Many women had to resort to using privatehealthcare insurance to get the diagnosisand treatment that they needed/wanted.

‘NHS staff did not take me seriously howeverprivate healthcare staff were brilliant andvery helpful.’

‘I just wish doctors knew to LISTEN, we knowour bodies better than anyone else.’

Nearly all the comments around treatmentchoice for fibroids explained that womenfelt like they were being pushed intogetting a hysterectomy.

‘I read a lot online about what to expect. Iknew nothing about fibroids at the time ofdiagnosis and the hysterectomy was presentedas the only option.’

Of the over 1000 plus comments that wereceived for endometriosis almost every

Informed Choice - Endometriosis

What information were you given about your treatment options? Please select multiple answers if applicable.

Answer OptionsResponsePercent

ResponseCount

Short-term complications 59.20% 1176

Longer-term complications 46.50% 925

Short-term side effects 62.60% 1245

Longer-term side effects 37.70% 749

Length of hospital stay 53.20% 1057

Time to return to work/normal life 56.40% 1122

Death rate 9.60% 190

Home nursing required 4.00% 79

Other (please specify) 369


skipped question 399


person spoke about being dismissed byhealthcare professionals and having tofight for a diagnosis, information andtreatment.

‘Any attempt to get help takes so long and isoften dismissed.’

‘There is a resistance that you encounter.’

‘It was distressing having so many GP andwalk in centre appointments and feeling thatmy pain and symptoms were not being takenseriously.’

These findings are concerning. If women arenot even told about, let alone offered, the fullrange of treatments then how can they beaccessing the best care? This Grouppassionately believes, having spoken to many

women, that informed choice is the mostimportant step forward for all conditions.

If women are to make an informed decisionabout treatment options, they need to fullyunderstand their condition, what treatmentsare available and what the short and longerterm impacts of those treatments are likely tobe. This is especially clear when consideringthat 39% of women surveyed sought a secondopinion and 67% of women got most of theinformation about endometriosis or fibroidsfrom the internet.

.

Endometriosis

It is concerning that the patient surveyhighlighted how hard women struggle to gettheir diagnosis of endometriosis, and thehuge barriers that they had to overcome tofinally receive this.

40% of women surveyed had 10 or more GPappointments before being referred to a specialist, which often did not give them the

help they needed, and 10% of women took 15years or longer to get their diagnosis fromwhen they first went to a healthcareprofessional with symptoms.

Even then, 9% of women had to wait 1-2years for their first treatment followingdiagnosis.

Fibroids

Most worryingly for fibroids is the automatictreatment choice which is most commonlyoffered was hysterectomy, with 70% of thosesurveyed offered a hysterectomy. Thereappears to be a variety of reasons for this:

- Gynaecologists used to carrying outtheir procedure – current culture ofpractice.

- Gynaecologists are not incentivised tocarry out non-surgical andpharmaceutical procedures – cultureof what has been the norm.

- Traditionally this was the only option– but not been the case for some time.

- Different tariffs for other procedures –


often benefits reflected in differentbudgets, or across primary andsecondary sectors, provide dis-incentives for procedures other thanhysterectomy.

Complications, the short term and long termimpact, should all be discussed. Over 40% ofwomen were not told about short termcomplications and this increases to over 50%for long term complications.

It is telling that many women suffering withfibroids and endometriosis turned to privatehealthcare insurance to get the diagnosis andtreatment that they wanted.

This Group was overwhelmed by the numberof responses they received. This is clearly anarea where people feel strongly about theirexperiences and the Group believes thatthere are clear improvements that can bemade.

‘I have had to get private health cover.’

‘I had to go private to get anyone to believeme. My friend, a fellow Endo sufferer, wasthe person who diagnosed me. I was madeto think that it was all in my head.’

‘It is s real shame that I felt I had to godown the private care route and pay for itmyself.’


Scale of the problem – Data from NHS Trusts

The APPG sent out a Freedom of InformationRequest to all appropriate hospital Trusts (139Trusts) to determine:

a) What data is collected by Trusts aboutfibroids and endometriosis

b) How well this is recorded and tracked

c) What procedures are actually being carriedout and the costs involved

The APPG was aiming to find out what currentpractice is and to paint a picture of the currentsituation. Unsurprisingly many Trusts wereunable to answer the questions that we askedin terms of tracking patients with pelvic painand tracking patients once they received adiagnosis.

The overall response rate from NHS Trusts was79%, please see the appendix for furtherinformation.

Key findings:

The average number of women diagnosedover the last three financial years forfibroids is 283 people per Trust, theaverage for endometriosis is 231 people.

On average over the last three financialyears each Trust recorded 91 womenreceived a diagnostics test forendometriosis and 147 for fibroids.

This number is very low – does thisimply a problem with the coding? TheGroup is concerned that these diagnostictests not being tracked, or recorded.

86% of Trusts were not able to provide ananswer as to how many diagnostics testswere needed in the last three financialyears to diagnosis endometriosis andfibroids.

This implies that they appear to not betracking the cost of misdiagnoses. Truststherefore have no idea of the costinvolved. This also means patients thatare admitted repeatedly to A&E for theirconditions are not being considered whencosts are looked at for these conditions.

What information is offered to womenwho present with pelvic pain/heavymenstrual bleeding:

- Several Trusts list Royal Colleges’information, such as the RCOG leafletand RCN leaflet. A couple of Trustsreferenced other guidelines such asEIDO healthcare leaflets and ESHRE.

- More Trusts than the Group expectedsaid that they only gave verbalinformation. Whilst others said theygave information on specifictreatments rather than on pelvic painand Heavy Menstrual Bleeding.

- Only 16% of hospitals provide womenwith written information about HMBand pelvic pain.

The Group was concerned that far toomany Trusts do not offer anyinformation, or only offer verbalinformation. At a consultation womenare unlikely to remember everythingthey are told, let alone the detail that isneeded for them to make an informedchoice about their condition andpotential treatment options.


Turning to the financial impact of thesetwo conditions we asked each Trust howmuch is spent on average a year onhospital admissions for:

- Fibroids was £576,197.58 and forendometriosis £362,241.99

The Group is concerned that this datamight not be accurate, or not trackedappropriately, however these figures arestill showing a substantial cost that couldbe significantly reduced if best practicepathways were followed. A group ofTrusts were still unable to answer thisquestion, prompting concerns from theGroup over tracking of these patientsand their conditions.

Trusts were asked how many times codeshave been logged each year in the last 5financial years:

- Hysterectomy – in 2015/16 in total28,678

- Fibroids figures – around 250 average– 28,756 in total in 2015/16

- Uterine Fibroid Embolisation – verylow, 11 as average per Trust, 788 intotal in 15/16, gone down from 922 in2013/2014

- Many Trusts records cannotdistinguish between a diagnostic or atreatment laparoscopy – the averagenumber of diagnostics laparoscopy’swas 39 per Trust in 2015/16, and 60laparoscopy’s for treatment. Thesevary from 0 and 1 procedures forCalderdale and Huddersfield NHSFoundation Trust and KetteringGeneral Hospital through to 242laparoscopy’s for diagnosis at Hull andEast Yorkshire Hospitals NHS Trust.

The Group believes that the overallnumber of laparoscopies is not as high aswould be expected from the number ofwomen who report symptoms.

Trusts were asked how manylaparoscopic excision surgeries andhysterectomies (code Q07.1-Q08.9) dueto endometriosis/ adenomyosis/fibroidshave you carried out over the last threefinancial years broken down by year – onaverage 128 for all conditions in 2015/16– 63% of Trusts could not tell thedifference of purpose for the operation.

These numbers are surprisingly lowgiven the high number of womenneeding care.

When Trusts were asked about thenumber, cost and purpose ofhysterectomies, often the Trust could notstate what the procedure was for,information received highlighted that:

- Average cost per Trust in 2015/16 forendometriosis was £277,709

- Average cost in 2015/16 per trust forfibroids was £297,350

- 64% of Trusts cannot answer thisquestion.

Whilst not all hysterectomies will be dueto these conditions (anecdotal evidencefrom FEmISA suggests that approximately60% of hysterectomies are on fibroids),this direct cost is significant, and does nottake into consideration other costs such asthe societal costs of needing care for 3months, being off work for some time,staying in hospital on average for 3 weeks5

without even considering the emotionalcost of having a hysterectomy.

5 FEmISA website

How many uterine artery/fibroidembolization procedures (code RC41Z)have you carried out over the last threefinancial years, for fibroids, broken downby year – the Group found that somehospitals do not do any, or do very lownumber.

- 11 is the average in 15/16

These are very low numbers consideringNICE guidance CG44 around thisprocedure, and the number of womenaffected. This is very concerning as it

reinforced what the Group found in thepatient survey, that all too often womenare not being told about all theirtreatment options. This also highlightsthe money that Trusts could be savingdue to the costs of a) surgery forhysterectomy, b) bed days at the hospitaland c) wider societal costs due to theinvasive nature of a hysterectomy andrecovery time.


In a report published by FEmISA in 2016, thepatient group notes that:

‘It is notable that where women have informedchoice as at a hospital with a multi-disciplinaryfibroid clinic e.g. Heartlands Hospital that UAErates are significantly higher than the average.Here they performed 241 UAE procedures over 2years, significantly more than other hospitals.’

At Heartlands Hospital over 2 years, ofthe 1077 women diagnosed with fibroids392 (36%) had hysterectomy, 44 (4%)open myomectomy and 241 (22%) UAE.

The national average is hysterectomy73%, and UAE 6%. This rather confirmsthat most women do not have aninformed choice about their fibroidtreatment.’

Combatting barriers


The Group has heard from a wide range ofpatients, clinicians and interestedstakeholders about what they think someof the barriers are to getting the rightdiagnosis, treatment and information forpatients.

The Group has taken this information andidentified the range of barriers below thatprevent women from accessing the bestservices and getting the diagnosis,treatment and follow up that they deserve.

These barriers include: cultural barriers,lack of information, lack of awareness andpathway barriers.

The Group has heard from a range ofpatients, experts and other stakeholdersabout what can be changed to helppatients.

We have assessed a wide range ofsuggestions and believe that byimplementing these changes, which are aminimum to no cost for the majority, therecould be a real and tangible differencemade to the lives of patients and we couldstart overcoming some of the barriersdescribed. These would also helphealthcare professionals gather all theinformation that they need to pass on topatients and make appropriate decisions inthe care pathway.

Barriers

Awareness

Lack of awareness of conditions is hugelyworrying, for patients who experiencesymptoms, but this has also been reportedto the group as being sometimes seenthrough the healthcare professionalpathway by patients:

Lack of understanding of thecondition by GPs.

“It was a traumatic, sad, painful wasteof my life and had my GP been moreinformed think of what a difference thatmight have made to me.”

Awareness

Wider public awareness ofendometriosis and fibroids.

Better awareness of the varied clinicalfeatures and manifestations ofendometriosis and selection of themost appropriate investigations byhealthcare practitioners may reducedelays to diagnosis.18

The ENDOCUL study, which includedinterviews with healthcarepractitioners, reinforces the view thatGPs require more information about

18 Huntington and Gilmour, 2005; Ballard et al., 2006; Dennyand Mann, 2008, in Culley et al., 2013a


AwarenessLack of awareness of conditions ishugely worrying, for patients whoexperience symptoms, but this can beseen right through the healthcareprofessional pathway. • Lack of understanding of thecondition by GPs.“It was a traumatic, sad, painful wasteof my life and had my GP been moreinformed think of what a differencethat might have made to me.”• Lack of GP education aroundwhat conditions are, and whattreatment options are available:� In particular there is a lack ofGP awareness of interventionalradiologists work on embolisation forfibroids which causes a referral delay� Similar concerns around GPawareness of non-surgical treatmentoptions e.g. for drugs and non-surgicalinterventions� Lack of GP knowledge of BSGEcentres for endometriosis and thespecialism needed in certain cases.• Endometriosis and fibroidsmyths that need to be overcome:- Pregnancy will cure yourendometriosis- A hysterectomy is the onlyoption for those suffering with

Lack of GP education around whatconditions are, and what treatmentoptions are available:

- In particular there is a lack of GPawareness of interventionalradiologists work on embolisationfor fibroids which causes a referraldelay.

- Similar concerns around GPawareness of non-surgicaltreatment options e.g. for drugsand non-surgical interventions.

- Lack of GP knowledge of BSGEcentres for endometriosis and thespecialism needed in certain cases.

Endometriosis and fibroids myths thatneed to be overcome:

- Pregnancy will cure yourendometriosis.

- A hysterectomy is the only optionfor those suffering withendometriosis, and will completelycure the condition.

- It’s not that bad and is somethingyou must live with – period pain

- You cannot have a non-surgicalintervention for fibroids and yourfirst treatment option should be ahysterectomy.

‘I was told I had to live with the painfrom endometriosis and to just getpregnant.’

Lack of awareness that theseconditions are debilitating on amonthly basis that has a huge impactif employers do not recognise or takethe conditions seriously, fromincreasing stress, to taking sick leaveetc.

endometriosis to assist in timelyreferral and diagnosis.19

It is necessary to build awareness ofthese conditions and generalmenstrual health – what is normal?

‘I had suffered a long time with mysymptoms but just thought it was partand parcel of 'being a woman'.’

Clinicians and Royal Colleges need towork with patient groups to increaseunderstanding and awareness ofconditions.

The profile of newer treatments andnon-surgical interventions needs to beraised.

Translate information leaflets - theENDOCUL study also highlighted alack of information available inalternative languages and tailored todifferent ethnic and cultural groups.20

NHS England and CCGs need topromote NICE clinical guidelines andensure that any guidelines arebrought to the attention of healthcareprofessionals and used.

19 Denny et al., 201020 Endocul study, De Montfort University


Information

Some Gynaecologists discuss thevariety of options readily with theirpatients, whilst others appear not todo so. The Group believes that inmany Gynaecology clinics aroundEngland and Wales, such patientfocused information is not freelyavailable, nor is the option of referraleasily available.

In the oral evidence session that theGroup held, it was repeatedly stressedthat there is no standardisedinformation leaflet readily available.

The Group has found that often thereis:

- Lack of information as to what thecondition is.

- Lack of information over treatmentoptions – clinicians need to explainwhat all of these are, and thepotential risks and benefits.

- The recommendations from NICEHeavy Menstrual Bleeding ClinicalGuidelines are that women shouldbe sent information before her out-patient appointment. According toFEmISA’s recent report only 2Trusts do this6.

At the oral evidence session aclinician explained that there areconsiderable barriers to handing outleaflets to patients.

Information

National standardised patientinformation leaflet across the country,to include:

- Generic information tools used byall providers

- National patient information leafletreadily available to GPs

- Better written information to giveto patients about differenttreatment options

- Up to date information leaflets –endorsed by specialist patientgroups and professional societies -RCGP, RCOG, BSGE. Consequentlywe argue that more information(both verbal and written) about themanagement, including non-medical- and self-management, ofendometriosis should therefore bemade available to women, andmust be delivered in a helpfulformat and provided in a timelymanner.21

Verbal and written information needsto be evidence based and focus onNICE guidance.

Commission that all women with adiagnosis of fibroids or endometriosisare given the information they requireto make informed choices.

Information leaflets on conditions ingynaecology clinics. Other formats forleaflets are also important and womenneed signposting to some excellentleaflets and other resources thatalready exist, often online. Women

21 Culley et al., 2013a

6 FEmISA Patient choice and NICE compliance survey on fibroidtreatment acute NHS trusts in England, conducted in 2016Report


The findings of the Group aresupported by other evidence. Cox etal., 2003, in Culley et al., 2013a statethat women reportedly receiveinsufficient information at diagnosis,and express a desire for moreinformation about surgery.

What was most clear from the FOIand the patient survey is thatinformation hugely varies from Trustto Trust, and from consultant toconsultant.

Most patients comment anecdotallyin the survey that they have foundinformation from the internet andthey receive no paperwork whendiscussing their diagnosis or theirtreatment options.

There is a lack of information aboutthe impact that endometriosis canhave on women's daily lives and waysin which they can be supported tomanage endometriosis. Women needto be signposted to these resourcesand offered support by specialistnurses and counsellors.

need time to discuss their personaloptions once they have been madeaware of these, and given time toconsider them.

‘I just want to stress that I WAS NOTgiven information about othertreatments for fibroids. I was onlyoffered a hysterectomy and, only throughmy own online research, did I discoverthe other options out there. I had to ASKfor these other treatments.’

Education

Educate GPs and gynaecologists aboutgynaecological conditions and aboutdifferent treatment options that theymay not be were of – include these intraining programmes and trainingmodules with CPD points for theRCGP and RCOG as there is evidencethat a lack of education and trainingmeans that they are not in a positionto advise women about theirsuitability.

Implement guidelines which areendorsed by relevant clinical bodies.

Ensure implementation andimportance of inclusion ofpharmaceutical, minimally invasivesurgical techniques and non-surgicaltreatment options in Gynaecologytraining schemes, and GP trainingwhich is given appropriate weighting.

The school curriculum should includeeducation about normal andabnormal menstruation, this could beincluded in PSHE lessons. This wouldhelp young women to recognise whenthey need to seek help with


Pathway barriers and referrals

There are a range of pathway barriers thatmean that even once a woman has soughthelp there can be countless problems. TheGroup has outlined these below:

Primary Care

For endometriosis there is a concernaround GP failure to refer, which canbe for a number of reasons. Thesefindings from our report aresupported in a systematic literaturereview produced by authors from DeMontfort University whichhighlighted a number of barriers toreferral at the provider and patientlevels.

- Several papers suggest that prior todiagnosis, women commonlyexperience repeated visits todoctors where symptoms arenormalized, dismissed and/ortrivialized, resulting in women

Pathway

RCGP, RCOG, RCN, BSGE to workwith patient groups to reinforcepathways in existence by NICE andESHRE, agree best pathway, andpromote implementation of thisacross the country. These groups towork together to produce a bestpractice pathway where needed andencourage implementation. This willfollow an evidence based approachwith quick referrals to correctspecialists with informationappropriate for the patient.

Streamline services to secondary careas appropriate.

Better information for primary andsecondary care clinicians. Utilise theBSGE model of accreditation forendometriosis centres.

Investment in sexual andreproductive healthcare training in

symptoms. School nurses could assistwith discussing these conditions. It isimportant that girls know what isnormal.

More needs to be done to encouragewomen to seek help earlier, throughtargeted educational programmes inschools and community (supportedby TOHETI study).


feeling ignored and disbelieved.7

- Within the ENDOPART study, thedelays amongst the sample werebetween six months and 28 years,and the average was 9.1 years.8

- The literature review reportedstudies which showed that somegeneral practitioners lackedknowledge, awareness andsympathy and displayed attitudesthat perpetuate myths aboutendometriosis.9 The ENDOCULstudy, which included interviewswith healthcare practitioners,reinforces the view that GPsrequire more information aboutendometriosis to assist in timelyreferral and diagnosis.10

‘GPs must take women seriouslywhen they present with endometriosissymptoms.’

- Delays were found to be commonat the primary care level andreflect resistance to referral.11

‘I had to wait over 13 years for adiagnosis When I knew I hadproblems with my period and painfrom when I started my periods Noreal support or help from GP.’

With endometriosis the history ofsymptoms, and wide range ofsymptoms means that a short GPappointment often results in a lack ofinformation being shared, and doesnot result in a diagnosis. GPs should

primary care to enable the primarycare workforce to meet the full rangeof women’s healthcare needs anddeconstruct the current silos that existin women’s healthcare.

Clinical practice should reflect NICEguidelines – with access to treatmentsranging from medical drugs, tominimally invasive procedures,routinely discussed and offered(TOHETI).

Commissioning Pathway

CCG campaigns and commissioning:

- CCGs to understand health, socialand economic benefits of non-surgical interventions and drugsfor fibroids and endometriosis.

- Commissioners to commissionpathways including onwardreferral.

- Improved collaborative workingbetween CCGs and localauthorities to better understand theneeds of local populations and toensure that women’s healthservices are commissioned using asystem-wide perspective (this willalso save CCGs money in terms ofreducing the number of hospitalreferrals for Mirena insertions).

- Ensure commissioners audittreatment of severe disease andcheck that such patients haveaccess to, and are referred to,accredited specialist endometriosiscentres.7 Cox et al., 2003a, b; Denny, 2004a, b, 2009; Jones et al., 2004;

Ballard et al., 2006; Denny and Mann, 2008; Manderson et al.,2008; Markovic et al., 2008, in Culley et al., 2013a

8 Culley et al., 2013b9 Cox et al., 2003b; Denny, 2004b; Jones et al., 2004; Denny

and Mann, 2008, in Culley et al., 2013a10 Denny et al., 201011 Denny and Mann, 2008; Nnoaham et al., 2011, in Culley et

al., 2013a


consider timely referral and offerwomen support from a practice nursewith specialist training in women'shealth. Women need support with thepsychosocial impact of endometriosisand this is not always readilyavailable.17

There is no simple diagnostic test forendometriosis, and diagnostic testscan be misleading in complicatedcases, which means that it is difficultto diagnosis and get all thisinformation.

More primary and secondary carenurses with specialist knowledge ofwomen's health issues are badlyneeded. This would free-up GP andconsultant time and be an importantopportunity to discuss treatmentoptions and managing endometriosisin more detail.

GPs are often not aware of all fibroidstreatment options and sometimes failto refer on to InterventionalRadiologists (IR’s) when appropriate.

Secondary Care

Gynaecologists do not carry outembolisation procedures and they canoften be reluctant to refer on forfibroids.

A close working relationship withgynaecology is important to ensure asustainable uterine arteryembolisation for fibroids service. It isvery unusual in the UK for there to be

17 Culley et al (2013) Endometriosis: improving the well-beingof couples. De Montfort

Pathway – specialist centres and specialists

BSGE centres

- BSGE patient information leafletscreated with specialist patientgroups.

- The RCOG, its specialist society,the British society forgynaecological endoscopy and theNHS have encouraged thecentralisation of the specialistservices in endometriosis centres.

- Forthcoming NICE guidance onendometriosis may also be helpful.

Specialist centres – for those requiringmulti-disciplinary teams for bothsurgical and non-surgical treatments.

Multidisciplinary team for fibroids(TOHETI reference) e.g. Guys,Birmingham Heartlands.

Utilise specialist nurses andencourage recruitment for thesepositions - not enough specialistnurses.

Potential for special women’s healthnurses at a GP level to reduce thedemand on GPs and who have moreof a specialty.


joint clinics where both aGynaecologist and an IR are bothavailable for assessment ofgynaecological conditions such asfibroids. There exist few multi-disciplinary teams.

FEMISA - NICE Heavy MenstrualBleeding Guidelines state that patientselection should be carried out by amulti-disciplinary team. Only 8 Trustsoffer this and women report that it isvery difficult to access UAE or to seean Interventional Radiologist whoperforms UAE.12

Not all centres offer UFE or MRgFUS.

‘It took ages to even find out that UAEwas available, and locally.’

Ensuring a referral to aninterventional radiologist, even ifpatients are aware of this treatmentoption for fibroids, can be difficult.

Gynaecologists can also be a barrierfor treating endometriosis,particularly if they do not have aspecialty in endometriosis:

- Culture of treating endometriosiswith surgery

- Patients have reported having theirsymptoms dismissed if other testshow that everything is normalwithout having a laparoscopy

- Short appointment means thatthere is no chance to discussoptions

12 FEmISA Patient choice and nice compliance survey onfibroid treatment acute NHS trusts in England, conducted in2016 Report


Short appointment times anddifficulty getting appointments meansthat patients often are forced to makea decision on the spot withoutconsulting family members, andwithout adequate information.

Referral to a specialist centre can becomplicated for endometriosis.

- There are BSGE centres, (TheBSGE is a specialist society and acharity with over 1,000 members.The BSCE accredits specialistcentres for the treatment of severeendometriosis).

- Can be long delays and longdistances to travel to reach BSGEcentres.

Not enough endometriosis specialistnurses or endometriosis specialists ingeneral.

Lack of consistency in care fromhospital to hospital.

There is also an issue with doctorswith referrals to second care cross-nationally. In Northern Wales patientsare often being referred to Cardiff at amuch more significant distance totravel, rather than across the borderto Chester.

General Barriers

Failure of standardisation of aminimum acceptable level of patientinformation across Trusts, both inPrimary and Secondary care.Information often not carried over.


Barriers to certain treatments:

- For non-surgical interventionsthere are perverse incentives inplace

- For drugs to shrink fibroids thereare barriers between primary andsecondary care commissioning

- For embolisation and otherminimally invasive procedures thetariffs do not accurately reflect thebenefits to these procedures.

Regional variation in access tospecialists and treatments.

A number of women in our surveysaid they received the wrongdiagnostic test for endometriosis.

NICE guidelines are not mandatorywhich means that Trusts do notalways implement evidence basedguidelines for managing theseconditions.

Women often did not feel that theywere fully included in decision-making about their treatment oroffered a full range of options.Treatments were felt to be restrictedbased on a clinician by clinician basis.

‘It seems that only by asking questionsand searching for different gynecologiststhat you can have a range of optionsavailable without the defaulthysterectomy.’

Commissioning barriers:

Tariffs and CCG commissioning formedication, such as Ulipristal acetate,and non-surgical interventions areoften barriers.


At the oral evidence session anexample was given of how medicationcan be used to treat fibroids. The issueof prescribing this sort of treatment isthat a gynaecologist is able toprescribe it to patients for the firstmonth in secondary care, however aGP is required to prescribe it goingforwards. Often GPs are not allowedto prescribe this by their CCG inprimary care setting due to cost – aprescription is around £100 a month.It was highlighted that the cost of ahysterectomy is £3,600, whereas fourcourses of the medication is muchcheaper at £1,200. The silo nature ofsecondary and primary care budgetswas highlighted as an issue.

Barriers to access to Mirena coil forgynaecological reasons –commissioning barriers due tofragmented funding andcommissioning, problems withtraining and maintenance of skills.13

New data from November 2016reveals a 0.38% fall in Mirena fittings,suggesting that barriers to access forwomen such as complexcommissioning structures are havinga tangible impact on uptake of thiseffective contraceptive andgynaecological intervention.14

Waiting times for referral to secondaryand specialist care and specialist carecan be lengthy.

There is a NHS England specialisedcommissioning specification (E10a)for severe endometriosis but it is notfully delivered.

13 Faculty of Sexual and Reproductive Healthcare14 IMS Health, XBPI, Units data, MAT November 2016


Support and after care

No follow up post procedure appearsto be standard, whether for fibroids orendometriosis. Often women havehad serious surgery or interventionand there is a need for healthcareprofessional engagement aftertreatments across the country.

These conditions can have significanteffects on the emotional well-being ofwomen and their families and manywould benefit from being able todiscuss issues such as sexualrelationships with trainedprofessionals (Culley et al 2013).Support groups can offer help towomen and partners and healthcareprofessionals should inform womenabout such organisations.

Depression, anxiety and emotionaldistress are not uncommon amongwomen with endometriosis, thoughthere is often a lack of awareness ofthese impacts and how to respond tothem (Culley et al 2013).

Often no reference to fertilityconcerns (De Montfort University).

Support and Aftercare

Follow best practice care pathwaysand ensure that this is available.

Emotional counselling and supportgroups signposted to patients.Women (and partners) should beoffered counselling or otherpsychosocial interventions if they arehaving difficulties living with chronicconditions such as endometriosis.Patient support groups offer supportand women should be made aware ofthe resources currently on offer fromgroups such as Endometriosis UK.Information should be available inaudio-visual format as well as writtenformat. Information, support andresources should be culturally andlinguistically appropriate for a diversesociety.

Better follow up afterprocedures/appointments and joinedup through primary, secondary careand discharge.

‘There is no dignity, and no support forwomen in constant pain.’

‘The after care is poor. No one tells youanything at all and there is littleinformation available.’

‘The thing that shocked me was howlittle support was given after thehysterectomy.’


Culture

Women have a lack of awareness ofwhat is normal regardingmenstruation and period pain – dueto this they may put off seeking help.

Women may be put off seeking advicedue to the stigma that persists aroundgynaecological issues.

Women failing to get a diagnosis whenthey seek initial help at their GP –women have frequently been told ‘it’sall in your head’ or ‘it’s just period pain’.

The perception of menstrualirregularities as ‘normal’ and theperception of menstrual pain assomething to be endured alsocontribute to delay in seeking help15,particularly for adolescents.16

Several people submitted evidencereferencing how those from lowersocio-economic background do notseek help and are less likely to get thehelp they need once going to their GP.

There are also concerns about thelack of access to appropriate servicesfor minority ethnic women withendometriosis as the ENDOCUL studyshowed. African-Caribbean womenalso have a higher incidence offibroids than white women.

‘I wish my doctor was more sympatheticand helpful.’

‘I feel that it is commonly dismissed as'bad periods' and hence 'not significant'.’

Culture

Treat all patients with dignity andrespect – culture surrounding ‘periodpains’ needs to be addressed.

Empower women to make a choice bygiving them all the information theyneed to make an informed choice.

More research needed into treatmentsfor endometriosis.

DWP update to ensure that whereappropriate severe endometriosis isclassified and taken into considerationas a debilitating disease.

‘It is very difficult to discuss the diseasein the workplace, the impact of beingstuffed full of painkillers and covered inheat patches a few days every monthwhile having to work is reallychallenging and completely exhausting.’

More needs to be done to help employersdeal with endometriosis.’

It's 2017 and women are beyond fed upwith the way we are being treated. Justlisten and believe them.’

‘Girls’ need to be informed andempowered so that they can lead a fulllife on their own terms.’

15 Cox et al., 2003b; Denny, 2004b; Ballard et al., 2006, in Culleyet al., 2013a

16 Manderson et al., 2008; Markovic et al., 2008, in Culley et al.,2013a

‘We have been silenced by society for too long.’

‘I have Endometriosis on my bowel, bladder, kidneys, urethra and ovaries and still have pain (still menstruating) but I appreciate the care I have received for many years and it shows that good care does make a difference to quality of life/fertility/conception.’

‘My experience of my second laparoscopy for excision surgery and the after care excellent however I was fortunate not everyone is aware of how to/able to get referred to a top endometriosis specialist on the NHS.’

I ‘really feel like I had good treatment and care from a specialist who understood the condition.’

‘I feel my care was excellent with all options explained by all professionals I came into contact with.’

I asked my gynaecologist to give me ulipristal acetate again. She let me take it for 3 months and kept giving me repeat prescriptions. It worked every time to stop my periods completely and give me my life back.


Addressing the barriers

This Group has laid out a listof recommendations that webelieve will benefit patients,clinicians and the widerNHS.

We can see clearly that thereis a strong economicargument for earlyintervention.

Endometriosis can hasa severe impact onwomen's lives includingtheir working lives.Speedier diagnosis andtreatment might help toameliorate some of thedistress that womenexperience and reducethe economic impact.

Minimally invasiveprocedures for fibroidshave a much quickerrecovery time resultingin less time in hospital,at a high cost, and lesstime out of work andcontributing to theeconomy.

Severe pelvic pain,fainting, heavymenstrual bleeding andother symptoms ofthese two conditionscan result in repeatadmissions to A&Ewhich put a strain onthe NHS and increasecosts.

What getting the correct information and treatment means.


Recommendations

Improve patient experience by:

1

Patient information leaflets (endorsed by the RCOG, BSGE, RCGP , RCN andRCR/BSIR and created in conjunction with specialist patient groups) to be used inGP practices, gynaecology clinics and for the general public in a generic format:

- These should cover information on the condition and information on alltreatment options – from hormonal contraception and pharmaceutical solutions,minimally invasive surgery and major surgical intervention.

- Information should be available for patients and also for families. Informationresources should be available, including in multiple languages, audio-visualmaterials and online website, blogs and testimonies.

- This information should also cover coping with the emotional stress of theseconditions, how to access support outside the NHS, and offer support to partnersand families. Also information needs to be specially prepared to be age relevant.Not all treatment are appropriate for younger women, or women who have nothad children etc.

2 Public awareness on gynaecological concerns focusing on what is normalmenstrual health and pelvic pain and what is not.

3 Treat all patients with dignity and respect and empower women to make a choiceby giving them all the information and access to the specialist services they need.

Improve awareness by:

4 Multi professional training and education opportunities to be supported by RCN,RCGP and RCOG – which have CPD points on endometriosis and fibroids.

5 PSRE education and SRE to include menstrual health at secondary schools.

6 Where NICE guidance exists it should be followed – Trusts and CCGs need to be made aware of this.


Improve patient pathway:

7 Simple best practice pathway endorsed and mandated across the country – aclear patient pathway agreed and rolled out for endometriosis and fibroids.

8 Ensure appropriate incentivisation for treatment through payment mechanisms.

9 Encourage multi-disciplinary team working at Trust – to include interventionalradiologists, gynaecologists and others.

10 Access to a clinical specialist nurse is an important way to improve patientunderstanding and patient care.


2009 was a pivotal year for me.I had just started university,I'd moved out of my childhoodhome, and I first startednoticing the pain.

It felt like blisters. One A&Evisit (of several that year)ascertained I had Chrohns. Abarium meal scan, 2 isotopescans, ultrasounds, MRI scans,endoscopies - all ruled thatout. I was then told I had IBSin 2010, that I was an "anxiousperson" (the consultant hadnever met me before thismeeting) and to go away andtake some tablets.

Back again in 2012, in agony.Another endoscopy. Nothing.It was getting worse. Iremember sitting at the busstop going home from uni intears because the pain was soincredible I didn't think I'dmake it home conscious. Iwent back. IBS again. Goaway. I'd lost a year ofuniversity already.

In 2014, I went to my localNHS walk-in center afterfainting on the train home

from work. The GP at thewalk-in center was concernedand sent me to the OB-Gyndepartment at the hospital.Hours in A&E, throwing up,eventually given a bed at 3 amin the Gynae ward. I sobbed asmy dad walked out of thedoors.

I knew I had a cyst. I met adoctor who was insistent I wasconstipated. I wasn't. I beggedthem to do an ultrasound,which they did the next day -lo-and-behold, a 5cm cyst onmy left ovary.

I was assigned to a Gynaeconsultant, who over the next2 years, would reluctantly seeme every month or so, tell meI didn't have Endometriosis,find yet another cyst, andinsist that I didn't needsurgery.

I got a second opinion lastyear resulting in an ablationlaparoscopy which gave me a diagnosis of stage 4Endometriosis. I was relieved.I was told my pain was madeup for 7 years. I had adhesions

on my left ovary, my bladderand uterus were stucktogether via my Pouch ofDouglas.

That was October last year.The pain is back. I've beentold to have children in thenext 5 years or to haveProstrap, a menopauseinjection which has beenproven in many studies tohave no effect onEndometriosis. I'm now beingreferred to a specialist inBirmingham, who can exciseall Endometriosis.

All it would have taken is justone person to believe me. Oneperson. I've lost 7 years topain.

Patient case studies

Marie Turner

I went to see my GP due toproblems with bleeding whilstexercising. She examined meand diagnosed fibroids. Thiswas later confirmed byultrasound scan. I was told myoptions were to do nothingand wait for the menopause tokick in during which time thefibroid would be likely toshrink naturally.Alternatively, I could havesurgery to remove the fibroid.

My GP explained in detailwhat a fibroid but to behonest, I was offered verylittle information and surgerywas the most commonly citedoption available to me. I wasvery concerned about havinga hysterectomy as it seemedsuch an invasive option with along recovery period toowhich would have a massiveimpact on my work – I run abusiness delivering exerciseclasses in the community.

I was a part time HigherEducation lecturer at the timeand therefore lucky to beaware of and have access toNICE guidelines. After a great

deal of time researching thetopic and considering theoptions available to me, Ibecame aware of the optionsfor non-invasive treatment offibroids. It was at this timethat I approached TrevorCleveland at Sheffield todiscuss the feasibility offibroid embolization. At thatstage a CT was alsoundertaken to checksuitability of my fibroid forUFE but GP’s at my localpractice seemed to know littleabout the procedure.

Before agreeing to have UFE Iwent to see a gynaecologist asNICE guidelines recommenda gynaecologist be involved inthe decision making process.The gynaecologist wasadamant I should have ahysterectomy and bothovaries removed. Very scary!

Trevor Cleveland and his teamat Sheffield were amazinglysupportive and patient. Idecided to go with UFE. I havenot looked back since.

Anne Little



Patient F: An example of what a best practiceexperience would look like is highlighted in theexperience of Patient F. Patient F was awarethat the symptoms that she was experiencingwere not usual and went to her GP. Her GPrecognised that there was a gynaecologicalconcern and referred her to a gynaecologist tocarry out further investigations. After furtherinvestigation her gynaecologist correctlyidentified her condition and set out a range ofoptions that were available, with writteninformation. The woman was then able to goaway and consider these treatments beforechoosing the option which was right for her. The patient was aware of patient group supportnetworks and used these following hertreatment. The Group believes that this is morewhat best practice should look like.

Best practice


Conclusion

In conclusion the WHAPPG believes thatchange is needed in the way that fibroids andendometriosis are diagnosed and treated. Thereneeds to be an agreed and accredited bestpractice pathway rolled out across the UK.NICE guidance needs to be followed across theUK to try to reduce unacceptable regionalvariation.

Women’s health conditions appear all too oftento be dismissed and women not getting the carethat they need as a result. NICE guidance,where it exists, needs to be followed across theUK to try to reduce unacceptable regionalvariation.


Appendix

Number of Trusts FOI’d: 139 NHS Trusts asked, of those 29 did not answer – response rate of 79%

FOI response rate – 79% response rate

Patient survey completion – 2,367 responses to the endometriosis survey, 237 to the fibroids survey

Written evidence numbers – 175 responses

Oral evidence minutes/speakers – published on the WHAPPG website


Relevant guidelines:

RCOG guideline on endometriosis

European Society of Human Reproduction and Embryology (ESHRE) guideline onManagement of women with endometriosis

NICE guideline on Endometriosis – due to be published shortly

Endometriosis UK information

RCN factsheet on endometriosis

NICE Clinical Guidelines on Heavy Menstrual Bleeding CG44 200, which is currently out for consultation

NICE QS47 2013 – QS on heavy menstrual bleeding, being updated – CG44

TOHETI patient leaflet on fibroids and patient video

Bibliography and Footnotes

1 http://www.nhs.uk/conditions/Fibroids/Pages/Introduction.aspx

2 Endometriosis UK website

3 Rogers PA, D'Hooghe TM, Fazleabas A, et al. Priorities for endometriosis research:recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46.)

4 University College London Hospitals. General information about Endometriosis.

5 FEmISA website

6 FEmISA Patient choice and NICE compliance survey on fibroid treatment acute NHS trusts inEngland, conducted in 2016 Report

7 Cox et al., 2003a, b; Denny, 2004a, b, 2009; Jones et al., 2004; Ballard et al., 2006; Denny andMann, 2008; Manderson et al., 2008; Markovic et al., 2008, in Culley et al., 2013a

8 Culley et al., 2013b

9 Cox et al., 2003b; Denny, 2004b; Jones et al., 2004; Denny and Mann, 2008, in Culley et al.,2013a

10 Denny et al., 2010

11 Denny and Mann, 2008; Nnoaham et al., 2011, in Culley et al., 2013a

12 FEmISA Patient choice and nice compliance survey on fibroid treatment acute NHS trusts inEngland, conducted in 2016 Report

13 Faculty of Sexual and Reproductive Healthcare

14 IMS Health, XBPI, Units data, MAT November 2016

15 Cox et al., 2003b; Denny, 2004b; Ballard et al., 2006, in Culley et al., 2013a

16 Manderson et al., 2008; Markovic et al., 2008, in Culley et al., 2013a

17 Culley et al (2013) Endometriosis: improving the well-being of couples. De Montfort

18 Huntington and Gilmour, 2005; Ballard et al., 2006; Denny and Mann, 2008, in Culley et al.,2013a

19 Denny et al., 2010

20 Endocul study, De Montfort University

21 Culley et al., 2013a



Abbreviations

APPG – All-Party Parliamentary Group

BSIR - British Society of Interventional Radiology

BSGE - The British Society for Gynaecological Endoscopy

CCG – Clinical Commissioning Group

ESHRE - European Society of Human Reproduction and Embryology

HMB – Heavy Menstrual Bleeding

MRgFUS - Magnetic Resonance-guided Focused Ultrasound

NICE – The National Institute for Clinical Excellence

RCGP – Royal College of General Practitioners

RCOG – Royal College of Obstetricians and Gynaecologists

RCN – Royal College of Nursing

RCR – Royal College of Radiology

TOHETI - The Transforming Outcomes and Health Economics Through Imaging (TOHETI)programme, funded by Guy's and St Thomas' Charity

UFE – Uterine fibroid embolization

UAE – Uterine artery embolization

WHAPPG – Women’s Health All-Party Parliamentary Group

informed choice? giving women control of their healthcare...women deserve every opportunity to take...

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