THE IMPACT OF WITHDRAWING FUNDING FOR IVF

Feedback to the and Peterborough CCG regarding the impact of withdrawing NHS funding for IVF and a proposal from Hall to improve fertility service provision in the region.

APRIL 2019 CONTENTS

Executive summary ...... 2

Results of the survey ...... 3

FOI data/Bourn Hall data ...... 5

Recommendations ...... 7

Appendix A: The Bourn Hall integrated fertility pathway ...... 8

Appendix B: Survey results analysis ...... 9

Appendix C: Impact of infertility on mental health ...... 11

Appendix D: Survey participants’ detailed feedback How has infertility affected you, your relationships and your health (or those of someone you care about)?...... 13

Appendix E: Survey participants’ advice What advice would you give your younger self regarding fertility treatment? ...... 26

1 EXECUTIVE SUMMARY

Background

In August 2017 Cambridgeshire and Peterborough Clinical Commissioning Group (C&PCCG) made the decision to remove funding for its Specialist Fertility Services, which includes IVF, Intra Uterine Insemination (IUI) and donor insemination.

It agreed to review the decision in April 2019 and to consider feedback on the impact this decision has made.

This document uses data from a recent survey about the impact of the removal of NHS funding for IVF, Freedom of Information requests (FOIs) to C&PCCG and Cambridge University Hospital Trust (CUH) and from Bourn Hall’s experience based on four years of delivering integrated NHS fertility provision in . Key findings

Survey

The survey shows that the biggest impacts of withdrawing funding were:

. Severe impact on mental health and/or that of partner – resulting in medication, depression, hospital admissions, lost days of work

. Stress on relationships – isolating, withdrawal from friends and family, destroyed marriages

. Strong sense of unfairness

. Devastating impact on lives – loss of meaning, dominated their lives, financial worries

We have also been able to analyse the outcomes for the C&PCCG patients who completed the survey.

A summary of the survey results is shown in Appendices B and C, and detailed comments made by participants (including impact on mental health) are listed in appendices D and E.

FOIs (C&PCCG and CUH)

We have been able to clarify numbers of patient referrals and waiting times and use this to predict future demand for fertility treatments (including IVF) – see page 5.

Bourn Hall Data

We report on the IVF success rates based on the significant amounts of data we have from providing NHS funded IVF from 2009 to date.

We demonstrate the effectiveness of the model currently used in Norfolk which integrates secondary and tertiary fertility services and the outcomes of this on pages 5 and 6. Recommendation

We strongly support the reinstatement of NHS funding for IVF in the C&PCCG region and have shown in the section FOI data/Bourn Hall data how the costs of this can be mitigated by integrating an efficient and effective infertility pathway from GP referral to resolution.

2 RESULTS OF THE SURVEY

Bourn Hall conducted a survey during February and March 2019 to assess the impact of withdrawal of funding for Specialist Fertility Services. The survey was promoted through the media, social media and sent to the 4,000 people that had responded to the petition organised during the consultation process which resulted in the withdrawal of funding.

Of the 300 responses approximately one third had some type of fertility treatment, one third needed treatment and the remaining third did not require treatment themselves but had seen the impact on a close friend or relative.

Without the option of a referral for NHS funded treatment the entire fertility journey has suffered. Time to referral, waiting times and number of appointments

. 15% of patients are still waiting for their first NHS appointment or have self-funded testing to speed up referral

. 25% waited 18 weeks or more between referral and their first appointment

. 43% had four or more appointments for testing and diagnosis; 20% had nine or more

This is supported by CUH data from the FOI which shows that over half the people on its current waiting list have been waiting for more than 3 months (91 days) from GP referral to their first assessment. Impact of withdrawal of funding

In June 2016 the CCG reduced the entitlement to one cycle of treatment. This entitlement was then removed completely in August 2017.

The Survey revealed that two thirds of the respondents referred to Level 2 after June 2016 received no treatment for their infertility. Patient experience of the fertility pathway

A number of participants reported that the fertility service felt disjointed, with tests performed sequentially by different departments with delays between each.

Frustration with the lack of information and time delay is illustrated by this response to the question “What advice would you give to your younger self?”

“Ask more questions. Specifically: ask about the whole process of referral and your options at each stage. We were living from appointment to appointment and not understanding what the outcomes of each test would mean and what our options were at each stage.

“Insist on having a named contact at each place you're dealing with, with a direct dial phone number - we were passed from pillar to post all the time, I spent far too long phoning down a list of numbers trying to find the right person to speak to get questions answered or to chase up appointments that we were waiting for.”

3 Cambridgeshire patients

The strong feelings from all participants are included in the appendices. Deeper analysis has been made of responses from patients living within the C&PCCG area that sought help for infertility from 2015 – 2019.

. Over half of those that responded to the survey need IVF, but 70% of those that need IVF say they are unable to afford it

. Some patients who are not able to afford IVF in the UK are considering going abroad for treatment

The survey of Cambridgeshire patients investigated the patient outcomes and reveals that over 50% of patients diagnosed with some form of infertility at Level 2 between 2015 and 2019 were left without resolution. Impact on health and wellbeing

The survey gives a snapshot of the impact that cutting IVF funding has had on the lives of people living in the Cambridgeshire and Peterborough CCG area.

The most often cited impact is on mental health and wellbeing, loss of self-esteem and negative impact on relationships with partners, friends and family. The emotional and financial stress feeds into feelings of isolation, worthlessness and serious mental health issues.

Patients that require IVF treatment and are unable to afford it describe infertility as having a “devastating” impact on their lives.

4 FOI DATA/BOURN HALL DATA

Referrals from GP to hospital for fertility testing and treatment (Level 2) (CUH data)

From April 2017 – March 2018 471 patients were referred by their GP to Level 2. Waiting times (CUH data)

72 patients are currently waiting for infertility investigation. Over half have been waiting for more than 13 weeks and six have been waiting for more than four months.

It was unknown how many patients have their fertility issues resolved at Level 2, how many appointments these patients have had or how long they remain at Level 2 before discharge. Therefore it is unknown how many of these patients would have been eligible for NHS funded treatment. Live Birth Rates (Bourn Hall Data)

C&PCCG is a member of the Fertility Services Consortium, which is responsible for the commissioning of fertility services. In 2009 the Consortium agreed its policy: that couples meeting the stringent eligibility criteria would be entitled to up to three fresh cycles of IVF and up to three frozen embryo transfers. This policy continued until 2016.

This treatment is considered best practice by NICE (The National Institute for Health and Care Excellence).

90% of NHS Cambridgeshire and Peterborough patients treated at Bourn Hall Clinic had a baby when the NICE protocol was applied.

For thousands of NHS funded IVF patients treated by Bourn Hall it has consistently achieved over 40% live birth rate per cycle of treatment, which exceeds national average figures by a significant margin. The Bourn Hall integrated fertility pathway in Norfolk (Bourn Hall Data)

In 2014 Bourn Hall was subcontracted by the Queen Elizabeth Hospital at Kings Lynn to provide Level 2 fertility treatment to patients in Norfolk. Bourn Hall implemented an integrated Level 2 and Level 3 pathway, while maintaining patient choice of providers, that has improved patient outcomes and created cost savings for the CCG.

This service has been so well received that the Norfolk CCG consortium is considering direct commissioning with Bourn Hall which is likely to enable further savings.

The service is delivered by a team of dedicated and experienced clinicians, fertility nurses and administrative staff at two clinics in the region – see flow diagram of the Bourn Hall integrated pathway in Appendix A.

Additionally, removing the burden of fertility care from gynaecologists at the Queen Elizabeth Hospital has freed their time to concentrate on surgery and oncology treatment.

It now has four years of data and has analysed this to reveal the following metrics:

The process from GP referral to discharge from Level 2 has been be streamlined and completed in an average of 114 days (Bourn Hall data), compared to the NHS average of 242 days (CUH data).

All the tests are performed at the clinic within one menstrual cycle – reducing the number of appointments and delivering a better patient experience.

5 Fertility is time sensitive. After the age of 35 a woman’s egg quality and quantity declines significantly, so if treatment is delayed the chances of success from assisted conception are reduced.

Around a third of patients in Norfolk will become pregnant at Level 2 through lifestyle advice or treatment.

Implementing the Bourn Hall pathway in Norfolk has created an average saving to the NHS of £500 per patient when compared to the previous NHS service. Reducing the number of clinic visits and the number of appointments for testing has created a cost saving of 30% compared to the previous NHS pathway.

From the Norfolk experience based on 450 couples referred each year from Norfolk GPs, the Bourn Hall pathway has provided an annual saving of £225,000 versus the traditional NHS pathway for Level 2.

Of each 100 patients tested at Level 2, 70% would require IVF, of whom 30% would meet the criteria for NHS funded treatment.

This metric suggests that if 471 people were referred to Level 2 in Cambridgeshire, then those eligible for NHS funded IVF treatment is around 100 each year.

6 RECOMMENDATIONS

Bourn Hall recommends further discussion with the CCG on the reinstatement of NHS funded IVF (at least one fresh and one frozen cycle) with the implementation of an integrated fertility pathway from GP referral to resolution. This would include provision of Level 2 and Level 3 services at its existing specialist clinics in Cambridge, Peterborough and King’s Lynn.

Evidence from delivering Level 2 services in Norfolk suggests that Cambridgeshire and Peterborough CCG could save £235,500 (£500 x 471 patients (CUH FOI)) by improving the efficiency of Level 2 services.

By creating a fully integrated fertility pathway, based on the Bourn Hall model, the savings from Level 2 would allow reinstatement of the Level 3 service for less than £80,000 a year. This is based on the expected demand for IVF from eligible patients minus the saving of implementing the Level 2 proposal (see above).

In summary, evidence gained from a survey of patient experiences and from Bourn Hall’s knowledge of managing NHS fertility care in Norfolk suggests that a patient-centric joined-up pathway would improve patient outcomes and create cost-savings that would enable the reinstatement of IVF in Cambridgeshire at little net cost.

7 APPENDIX A: THE BOURN HALL INTEGRATED FERTILITY PATHWAY

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or lifestyle options (adoption, childlessness) supported by counselling. by supported childlessness) (adoption, options orlifestyle Surgical corrections include operative hysteroscopy (fibroids and polyps etc) and laparoscopy laparoscopy and etc) polyps and (fibroids hysteroscopy operative include corrections Surgical under are which etc), (endometriosis by phone is arranged scheduling treatment and prescriptions Drug the in scheduled are and nurses fertility specialist by are undertaken scans monitoring Ovulatory monito are cycles Subsequent tests. progesterone with along cycle first a doctor by reviewed is OI programme unsuccessful family oralternative treatment, conception, natural through parenthood as defined Resolution

. . . .

8 APPENDIX B: SURVEY RESULTS ANALYSIS

Current status of 101 people in the CCG that responded to the survey

Current status Respondents Notes Advised to wait 1 Not offered NHS testing 2 Waiting for tests and/or results 15 Need IVF – can’t afford it 26 Need IVF – considering going abroad 5 Need IVF – will self-fund 2 Need IVF – not decided what to do 8 Many saving for treatment Decided not to progress 2 Treatment with OI currently 3 Having IVF treatment currently 9 Including 5 self-funded Have child/pregnant following IVF treatment 20 Including 4 self-funded Had a child naturally 3 Adoption 1 Other 4 Total 101

Pathway of patients that had been referred to Level 2 in Cambridgeshire

Respondents Pathway Additional outcomes Notes Access to testing 101 37 have had some 64 need treatment Over 60% receive no kind of fertility treatment treatment 15 not had first 6/15 over 30 years old 3 decided to pay for appointment for 4/15 have been waiting for over testing, 2 not given testing two years option of NHS testing, 3 advised to wait so not referred 85 had NHS funded 62/85 waited more than six weeks More than a quarter testing for first test. 23/85 waited more waited more than than 18 weeks 18 weeks for first appointment Outcome of Level 2 101 5 given no advice 2 told they needed to lose weight 3 think they need IVF before they could access support. and can’t afford it 5 referred for Ovulation Induction 3 referred for surgery 3 need IVF – 2 can’t afford it and 1 eg removal of fibroids, will self-fund varicocele, repair of testes 47 Referred for IVF 6 having treatment 1 IVF as egg donor, 3 self-funded IVF 15 can’t afford treatment 3 considering going abroad 1 will self-fund

9 5 not decided 15 pregnant or have a child (NHS All referred before funded) Nov 2017 2 have a child (self-funded) 3 waiting for results 17 Unexplained 3 pregnant naturally 3 pregnant after IVF 1 NHS, 2 self-funded 5 can’t afford treatment 2 considering going abroad 2 waiting for tests 2 not decided 1 not progressing 1 adopting

10 APPENDIX C: IMPACT OF INFERTILITY ON MENTAL HEALTH

The CCG has also invited feedback on the impact of infertility on wellbeing and mental health

Over 300 people responded to the survey and 265 answered all the questions (a further 40 were incomplete). This demonstrates considerable support for reinstating NHS funding for IVF treatment.

One third of the responses were from people who felt strongly that the postcode lottery was unfair and should be removed, but were not directly affected by infertility. The majority of these people responded as they knew of a friend or relative that could not access treatment and they had seen the impact it had on their lives. Feedback from all responses from the survey What is the impact of withdrawal of IVF funding?

Full responses included in Appendix D.

Category of impact Responses Notes Severely impacted mental health 62 Medication, days off work, hospital admissions, and/or that of partner depression, inability to work Created stress on relationships, 52 Isolating, withdrawal from friends, destroyed with partner, friends and family marriage, guilt, sadness of potential grandparents Concerned about the impact on 36 Description of impact on own children someone close to them struggling with infertility, close friends, others in family Unfairness of postcode lottery 20 “Devastating” impact on their lives 17 Suffered from financial stress 6 Having a genetic condition still did 3 Patients with known genetic conditions such as not result in help cystic fibrosis Secondary infertility stress 1 Went abroad for treatment 1 Other 13 Total responses 210

11 Those that needed IVF treatment were asked what advice they would give to their younger self

Full responses included in Appendix E.

Category Responses Example advice Ask more questions, push for 35 Do your research first and know what to ask, answers and testing typical response always seems to be the very least rather than what's best for patient. Don’t wait 32 Push for answers sooner, you know your body, don’t be fobbed off with the “it’s because you are overthinking it” answer – you had to deal with this for 2 years before being taken seriously Journey is disjointed 5 Ask more questions. Admit you have infertility and get 7 Don't be afraid to admit when times are support from others emotionally hard and seek professional help for mental health for this journey Save for treatment 9 We saved up a lot of money, I went to work self employed at home ready to give a suitable home to a baby. However with 3 miscarriages and 2 ectopics (I'm pretty much infertile, my remaining tube is so badly damaged) my mentality is easily snapped. Some days I just spent an entire day crying because I'm desperate for my own family and for something to wake up for. My boyfriend brought me a puppy and without that "baby" I don’t know where I would be now. Don’t give up 4 Trust your instincts if something doesn’t feel right. Don’t wait to speak with your GP & try not to blame each other as a couple. Have faith that there are others like you, and that good doctors will try their best to help you become a parent. Lose weight 2 To keep healthy, keep weight down, try not to stress about it. Stop pill earlier 1 If I wasn’t on the pill I would have been diagnosed with endometriosis earlier and could have gone for tests earlier Try not to let it dominate your life 3 Treatment decisions aren’t fair, but they aren’t a reflection of your self-worth. You are not on your own. You will get there, you don’t need to worry. But it’s ok to cry, there is no shame in where you are, it’s hard but miracles do happen. Freeze your eggs 1 Move 2 Move to Norfolk so that you can have treatment funded. Cambridgeshire do not care about you. Other 4 Total responses 99

12 APPENDIX D: SURVEY PARTICIPANTS’ DETAILED FEEDBACK

How has infertility affected you, your relationships and your health (or those of someone you care about)?

Severely impacted mental health and/or that of partner

 Depression and anxiety were a big factor for a number of years, also feeling like I was letting down my husband who didn’t have fertility issues and really wanted a child as much as I did. My best friend is also going through a similar circumstance but started the fertility tests much later than I did and missed out on the NHS funding so has been told to save for private IVF treatment. This could take a while and she doesn’t think she would get finance for it due to credit rating. She is 38 and desperate to become a mother. She is godmother to my son which is bittersweet for her as I know how much she would love to have her own child.  A friend has had a major impact on mental well-being after going through several miscarriages  As a Counsellor, I see first hand the huge psychological and emotional impact infertility and lack of funding has on a person's mental health and emotional wellbeing  Big mental health issues when seeing everyone else fall pregnant and you can't. If we hadn't gone for private fertility treatment when we did in July 2018 then I was at the stage of considering starting counselling for depression. As soon as we started private treatment at Bourn Hall my anxiety and breakdowns completely reduced  Both daughters it is terrible to see the trauma this cause, surely ivf is cheaper for the nhs than a lifetime of depression prescription s?  Both. My marriage has suffered and so has my mental health. I was diagnosed with circumstancial depression and anxiety shortly after my infertile diagnosis in 2016. This affects me daily.  Caused mental health issues  Depression, stress, emotional, heartbreaking  Depression, very low mood and self worth, suicidal thoughts  Emotional turmoil  Extreme stress and anxiety. Affected my relationship in a very negative way. It is affecting my mental state immensely and there for affection other aspects of my life  Found it very stressful having to try for 3 years before getting ivf funding! I was 38 when my ivf baby was born and feel I am sadly probably too old to now have a second child!  Frustrating uosetting  Half half, upsetting though, occasional break downs  Have regular low moods, tired, stressed, worried that it will never happen, but has made me and my husband stronger.  Hit my partner very hard and she had trouble coping with it to start with  Huge affect on my mental health and strain on our relationship means I have sought counselling. I feel lost and detached from life, made worse by constantly having to fight against the NHS. Financial worries have led to stress too. Stress has caused IBS and migraines too.

13  Husband has depression. Self confidence is rubbish I feel worthless underable afford or get pregnant  Husband suffers from depression, have drifted away from friends and families as can't cope with seeing their children, now avoid social situations.  I found it very difficult not being able to have children and deal with it on a day to day bases.  I personally suffered from recurrent miscarriage and benefited from testing and anticoagulant treatment which allowed me to have my 2nd child. A good friend struggled for many years with infertility and conceived her only child on the 2nd round of ivf (the first resulted in a miscarriage). This was a very stressful and upsetting time for her, which affects her to this day even though she now has a child.  I tried to relax and being as usual however such a long time we are waiting for baby. It could course stress especially when the pregnancy test showing you - every month. We as a couple changed our life stile ie. eating healthy . But every cycle is more and more flustered for me and my husband.  I was in hospital a lot having to take time off work, my husband too. I am so very fortunate to have a little girl from my first IVF round and am very thankful, to take this opportunity away from anyone is awful just because of where they live. If I’d had earlier treatment maybe I’d have gone on to having more children but think I will now have only the one.  I’m emotionally drained, I feel like a failure. I watch my family and friends become parents and although happy for them the pain I feel everyday is physically and mentally damaging  Im the one with the issue and its all my fault due to my treatment of my diabetes when i was younger, it affected my mental health alot as i wanted to be a parent for a long time and thought i couldnt! I would never have the money to afford self funded ivf as i dont have a well paid job to cover the costs let alone pay for daily living. We have a fertilised embryo in storage that im desperate to have but again im financially unable to pay for that and it eats at me every day thinking "what if" It ruined relationships in the past due to others wanting children and my un ability to. Finally finding a person who also suffers with type 1 diabetes and having a understanding of how it affect someone relieved alot of pressure on myself... I have a beautifull 3 year old son now who is the best thing in the world and i would do anything for him.  Irrepribly. My marriage has never quite recovered from the depression, anxiety I suffered from as a result. My health is now not great. Auto immune diseases. Possibly triggered by the stress.  It affected my mental wellbeing for around 1 year after diagnosis and I feel it has changed the person I am today. I look at life differently, more pessimistically I suppose. It has put a strain on my family due to the genetic element of my condition.  It caused emotional strain.  It has been a struggle with the fertility issues but I am lucky my husband is very supportive  It is very stressful but we had a lot of support from our friends and family  It left me feeling inadequate as a woman and a failure to our families  It made life hard to deal with some days as lots of doubts I would ever be blessed as a mother and for many women it’s a life goal and felt a bit of a failure but luckily it made my relationship stronger and we really stuck together.  It made me suicidal. It made me feel less of a man and made me question my marriage.  It makes your feel incomplete , left behind. Resentful towards your friends. Angry , depressed. You feel like you’re a failure. You avoid certain occasions as you know the dreaded ‘when are you having kids’

14 question will be asked. It makes you want to in away crying. It affects your relationship with your partner . One maybe more affected by infertility more than the other. You take your frustrations out on each other. You end up being jealous of your best friends and frustrated as nobody understands your feelings no matter how hard to try to explain it. You become sensitive and lose yourself.  It was very stressful. I did 1 successful NHS round and 2 unsuccessful self funded rounds.  It’s made me feel guilt and depression with myself as this is because of me.  It's affected everything.  Made us all depressed  Mental health issues  Mental health issues from ectopic pregnancy, miscarriage and years of infertility Relationship issues due to infertility  More then I ever thought it would I have developed panic attacks and full breaks downs I didn’t think was possible for me to ever have. I struggle to see my purpose in life if I can’t ever be a mummy. It’s all Iv ever dreamed off. Iv become fairly bitter to the world when I see family’s that smoke or do drugs kr who are over weight or fell pregnant by “mistake” and I guess I’m still comming to terms with the thoughts of “why me” why don’t I deserve that change to be a mummy. I also feel guilty as my parents who are in there 60s are working more hours then they should at there age to help pay for our treatment. This makes me feel grateful but the guilt in horrible.  My husband is the one with fertility issues which does affect him massively with his mental health. I unfortunately can't have another child due to renal failure.  My mental health and confidence is very low IVF distoryed my sole and understanding with no reason for not having children. My relationship is very strong with my husband we work as a team both heart broken not having children.  My mental health has declined seriously even though I had a successful round of IVF and now have a child  One of the worst experiences I’ve been through. I think in hindsight it affected my mental health severely at the time. It’s not nearly as bad now doing our self funded cycles, because we have a clear picture of what our issues are and also we’ve managed to have a little boy. It’s much easier already having a child already, which made me reflect on how awful it was to be childless, when everyone around you is having them.  Profoundly. We now have a wonderful daughter and I am incredibly happy. However the process of answering these questions has reduced me to tears just reliving what we went through. After we had been trying for a baby for about 2 years I quit my full time career because I couldn't cope with the stress of working on top of the stress of undergoing the fertility tests. On the positive side I think facing it together made my relationship with my partner even stronger than it was before - we know we can rely on each other when things are hard.  Relationship struggles, aniexty and high levels of stress  Sadness, angry and confidence in body gone down. Scared that will never have children of my own  Strained at times  Strained relationships, jealousy  Stress, emotional, anxiety with friends  Stress. Painful. weak, sad

15  Stressed , emotional , no help from nhs  Stressed all the time and very upset most months  The view that you should be able have a natural child even if it needs medical intervention because you are otherwise unable to breed is extremely damaging and telling people it is tantamount toa right causes more trauma than simply not being able to reproduce.  This is a difficult question to answer as I have many reasons I could write down. It has took me many years to even talk about Infertility as I was so ashamed and embarrassed. It has tested my marriage a lot! Due to my health and in and out of doctors/ hospitals. Plus my hormones are up and down a lot!! But we’ve learnt to talk to each other even on the worst days. I struggle to go to my friends baby showers or my nieces and nephews birthdays. Since I was young I’ve always wanted to be a mummy, it’s hard to come to terms with knowing one of the easiest and most natural things you could do is now the hardest and most exhausting times of your life! My health isn’t great because of my struggle with endometriosis and I’ve had to take time off work. I have even thought of changing my career as I work in the childcare profession and some days are a lot harder than others. Stressful everyday situations are heightened I feel because of the constant struggle to have a family. I have to take each day as it comes now as I wasn’t coping physically or mentally and had to take more time off work. Everything came to a head last year I was in constant pain and the doctors needed more blood tests and I was very weak. My husband has been my absolute rock and he’s helped me try and deal with our infertility journey. It’s been nearly 4 years since we first started trying to conceive and now we need medical intervention. We’ve come to terms with this, but now we are stressing about the cost of IVF and we’ve considered just accepting that maybe it won’t happen. The cost is so expensive and we’ve spoke about the possibility of if we have to save then maybe we should stop trying to conceive as we will be saving for a while and trying to have a family consumes your whole life, without having to try and find thousands of pounds. I just really hope that there is still the possibility of IVF Funding to help mine and my husbands dream of a simple life with a beautiful family comes true.  Very depressing, flustered, unmotivated  Yes, I was upset and it became my whole life, but I never told anyone beyond a very few people, it was very difficult to be happy  Depression  Depression  I’m severely depressed and on antidepressant at the moment  Created stress

Created stress on relationships, with partner, friends and family

 adding a lot of stress to our relationship  Although we now have a child via IVF the process was extremely stressful and took its toll on both of us.  Anxiety, depression, difficulties in previous marriage, probably contributing to its end, damaged relationships with friends. It’s really really hard and the support from what I’ve experienced in so limited.  Caused anxiety and prevented relationships forming during younger years  Effected family at the moment  Hard, I struggle with anxiety, it’s out a lot of pressure on my relationship financially. Stressed because it’s somethjng we both want but where do you draw the line?

16  Horrid, no one to talk too and feel ashamed! I feel for my wife taking medication and wish could be tablets for both of us rather than injections!  Huge impact on our marriage and stress levels. My husband is very impacted by infertility. We have distanced ourselves from friends & sometimes family. At times we can feel socially isolated when we cannot join in with the couples who have children.  I always wanted a family and when I found out my partner was infertile it put a huge strain on our relationship. We had a solid relationship but i still got depressed which caused my partner to feel guilty. Our only option was icsi ivf which we had to pay £2000 for his op. We were one of the lucky ones as the ivf was funded and we had a beautiful baby girl. She truly is a blessing. I think back on the years that there seemed no hope of becoming parents and it really was a dark and difficult time for me. I believe everyone should at least be able to have one cycle funded for their own mental wellbeing.  I have been suffering with depression since I was 26 (now 31) when me and my husband decided to try for a child. Being told it was un explained infertility was difficult for both of us, then being told my weight was the reason why I couldn't get pregnant, then being given medication that never worked and then watching my friends have children has been extremely difficult for me to deal with and that has caused issues between me and my husband because he doesn't know how to help me when I'm feeling very low. At my lowest I have told my husband to leave and find someone who can give him the child I can't. I find myself getting jealous of women I don't even know just because they have a child and dont/can't.  I’ve lost friends who don’t understand the IVF process. I’m anxious 24/7 and feel depressed when people get pregnant  Impacts my friends life severely.  It affects all of your relationships and all aspects of your life.  It had a big impact on our relationship. It affected my health can make you depressed as you can't have a child and so many people around you can. Affects friendships as it's hard when they have children. Put my life on hold as lots of things I didn't do because of feeling down or incase It clashed with treatment felt couldn't take promotion at work. When I was pregnant very anxious something would go wrong.  It had a huge impact on my husband and I, we became isolated from family and friends. Our well- being was compromised, we went into a lot of debt to pay for treatment as otherwise we would have split up. It was horrendous especially as it felt like we were unsupported by the NHS.  It has affected me greatly, especially as it seems everyone close to us is falling pregnant almost instantly. We decided to keep our fertility journey private from the start, apart from telling a few close family members and friends, but we've found that this has made it harder as people are unaware of our situation. I find myself distancing myself from friends who are pregnant or have recently given birth, and I no longer know how to be truly happy for them when they have something that my partner and I want so badly. We feel that the 'unexplained infertility' diagnosis makes things even harder as there is no guarantee that we will ever conceive, and we have no way of knowing how to fix it. My partner is extremely supportive and we often talk about our journey, but we both feel as though we're letting the other one down. I am close to my mum and sister, but can't really talk to them about it as they have six and four children respectively, and therefore struggle to empathise, with my mum commenting that I come from a fertile family and to just be patient. In the past eight months or so I've started to suffer with stress and anxiety towards the end of my cycle as I dread the day my period starts and we know we've been unsuccessful for another month. The thought that there may not be an answer to our infertility, or an affordable solution, is what scares us the most.

17  It has changed me as a person, made me angry at the world and depressed, almost broke up my relationship with my partner and have lost friends over it. It has had a detrimental effect on my life.  It has made my husband and I feel really unhappy and upset. It is also very disappointing for our parents, especially my husbands who have no grandchildren.  It has put a strain on my relationship with my husband, he is very supportive but the experience has made me quite depressed.  It has significant importance in my relationships.  It hasn’t affected me personally but I know people who have needed it or would need it  It instilled distance between me and friends who had children as I struggled to cope emotionally, the why not me syndrome. I felt I was failing our parents and families who were so looking to becoming grandparents. My life focus was only about conceiving, my desire to continued success in my career waned and I was less creative, less productive in my role.  It is a big strain on your relationship, the worry and stress of all the tests and still not knowing the outcome. Most importantly trying to lead a normal life around others that don’t know what you are going through.  It massively affected me, I suffered from depression and anxiety, despite being one of the lucky ones that meant I live in a postcode area that does fund IVF. If I wasn't in that position, I honestly don't know what I would have done... I don't actually know that I would still be here... I am forever grateful to the NHS for our miracle.  It put huge pressure on my marriage. I also lost lots of friends along the way because they were having their own families or they didn't know the right things to do or say to support us. Healthwise the waiting game caused problems with endometriosis/PCOS. I lost my job (in the NHS) so financial pressure & it all took its toll on my mental health.  It was a horrible time which put an immense strain on my relationship with my husband as well as family, friends and coworkers. Particularly when you’ve followed the traditional route of marriage first etc, there is suddenly so much more pressure on you to produce a child. So many people fall pregnant without even trying so they will never understand the pain caused by years of infertility.  It was really affected me and my husband, it is very stressful and worrying. We only heard last week that my husband has a very low sperm count and mobility so it is very likely we will need IVF, this news was devastating  It’s effected our whole lives.. it has been issolating and very low.. With the help of the nhs and Bourne hall we now have our boys and have us our whole purpose back. Every person deserves the chance to have a child.  It’s honestly the hardest thing I am going through and still fighting for every single day and it effects my relationships as it becomes too big of an issue  It’s made me withdrawn from my friends who are announcing left right and centre that they’re having children, it puts a huge strain on my husband and me and I can’t even talk about it anymore.  It's devastating for my wife and incredibly stressful. There isn't a moment when you aren't thinking about it.  I've had two children via IVF (NHS and Self Funded). If it wasn't for being successful I think my relationship would be greatly affected. My health is ok.

18  Lost friends as they had children and I did not. Was very depressed about infertility and had counselling  Massive affect physically and mentally for the 5 years of trying put a lot of stress on our relationship but we were lucky we had a child. I know others who haven’t and has ultimately ended the relationship  Massive stress on both partners leading to break down in relationships and mental illness such as depression and anxiety.  Massively. Effected every friendship with people with children, pressure on my marriage, effected work. Had to reduce working hours. It controls my whole life everyday.  Massively. My marriage nearly ended due to the stress. I feel hopeless, less of a woman. It has strained family relationships as they don’t know how to help. It has hugely impacted my mental health and I was in a very dark place when finding out I needed ivf, especially as I’ve been waiting 6 months for counselling.  Me and my husband struggle. We want children and can't. We argue a lot. It's very emotional. I have been put on anti depressants just so I may carry on with life  My first miscarraige - I lost 2 of my closest friends. They both got pregnant at a similar time and I was like a "dirty contagious raincloud" I wasn't included anymore. It got mentally too much for me. In the end I broke down, packed my life up and moved away. I left my boyfriend and it devastated him. My 2nd misscarraige ruined a new relationship and I moved back home. My 3rd misscarraige was difficult to accept. I was told at work by a manager "your lucky we gave u time off for HCG tests and the methatrexin injection" - I shall never work for a company again. I'm now self employed and put my money saved into a business instead of IVF. My 4th loss was ectopic. That was mentally sole destroying. I lost my relationship with my sister. It was honestly the worst time of my life and I have never really recovered. My last ectopic was just 2 weeks ago. I wrote on my stomach a note to the surgeons to beg them to save my tube. My tube is still there but it's extremely damaged and the chances of a another ectopic is so high. I can't go through it all again. Between my last 2 ectopics I waited 2 years for that baby to have it inside me for just 10 days. I have lost so many other friends, I can't run my business as my mentality is not what it should be to be professional enough. I don't claim benefits. I started breeding Bengals which gives me just enough to pay bills and treat myself every now and then. I wake up in the morning. I see my scars physically every day. Please don't let me have gone through what I have for nothing.  My partner and I have been trying for 6 years and miraculously I fell pregnant naturally last month.  My wife has fertility issues, we couldn't naturally concieve, it put a lot of strain on our relationship, my wife suffered greatly from depression, she said she felt less of a woman and didnt understand why i stayed with her when i could have kids with other women, we both went through a lot of stress trying to conceive and suffered numerous miscarriages. we got approved for NHS funded IVF mere days before the funding was cut in the area, we went ahead with it and were successful on our first attempt. Probably one of the last couples in the area to be successful  Nearly lost my husband, and depression for me. Found out jan last year and still struggle around pregnant people. Paying for a donor is very expensive, but if I got two rounds of ivf, this would relieve the stress of the money situation, and means we could try maybe three more times  Our infertility experiences had a seriously detrimental effect on our mental health and relationships with some family members.  Put extra stress and pressure on me and my partner, making us feel depressed and anxious about it all.

19  Put severe strain on relationship and contributed to depression  Recurrent miscarriages has impacted my marriage  There were moments of high stress but you just have to have a husband or partner who is very supportive. Therefore it strengthened our relationship but the grandparents found it hard that we wanted some alone time when babies came home. My endometriosis never returned!  Very stressful for both me and my partner but has made our relationship stronger  We are now unable to have anymore children due to cost. My wife is depressed and amongst the causes is the inability to conceive naturally. Personally I would love to have more children of my own and it strains our marriage to discuss or think about pregnancy and the cost of IVF.  We are stronger than ever but it was tough at the time  You have to have conversations you never thought you needed to have with your s/o, mum & dad, bosses at work. Everytime someone brings in a baby to work or announces a pregnancy it hurts.  Detrimental effect on relationships so far. Depression, guilt and frustration growing.

Concerned about the impact on someone close to them

 Heart breaking but after several goes many of my friends now have a family of their own which nobody should put a price on  Depressingly sad to hear off a loving couple who would be great parents but due to postcde cannot  Friend had several miscarriages and don't know why. Not got a child, deserves the chance.  Friends have struggled to have children and are unable to afford ivf  friends who have been trying for 3 years and cannot fund ivf privately due to the cost of living  Hasn't affected me personally but one of my sisters needs IVF and there is no way she can pay for the treatment.  Heartbreaking  Heartbreaking to see someone you care about go through the pain of not being able to conceive when I have been blessed with 2 wonderful children  Huge impact on my sister and partner  I have a close friend who has experienced 5 loses- her only option now is ivf  I have a daughter with polycystic ovary syndrome and she will require ivf to have any hope of a family.  I have a friend who tried to conceive naturally and couldn't and thanks to ivf she has a beautiful baby girl  I have friends currently saving to find IVF treatment.  I have seen a number of friends struggle to concieve and it has been heartbreaking for them. Strains on relationships and the mental health issues that come with infertility are so awful. It truly is heartbreaking to watch the people you love and care about go through such anguish.  I have seen it have a significant impact on the mental health and wellbeing of a very close friend and her partner. I have seen the years or worry and torture. I do not yet know if I will need to access treatment but I know it would have a significant impact on me if I did.

20  I have witnessed two friends, try to conceive and lose babies. One thankfully with the help of Bourne hall got her baby in the end, the other has just experienced her 5th loss. Fertility treatment means the absolute world to some people, and it’s unfair due to cuts that my second friend may not get the positive result she’s dreaming of.  I now have twin grandchildren via IVF, it was heartbreaking to know one’s daughter could not conceive without ivf. This was a second attempt.  I think a chance should be given to anyone suffering from infertility.  I was referred for IVF consultanation in 1999, then when my appointment finally came through I had found out I was 3 weeks pregnant. I've suffered with a miscarriage and know of a number of friend who have self funded, had numerous miscarriages.  I was very lucky that I didn't need treatment in the end - but just knowing it was available and I had an appointment was enough to trigger my body into pregnancy. How much more anxious will couples be who do not have this option? I have family and friends who tried for years - decades in several cases - both funded and self-funded. They suffered many heartbreaks, but the joy in their lives from finally having a family - you can't put a price on that.  it has effected the mental health of someone close to me. and may mean same sex female couples being treated unfairly because of there sexual orientation.  It hasn't specifically affected me (I am yet to try for a family) but I have seen the impact via social media etc  I've seen many people really suffer psychologically from infertility problems and an inability to conceive.  My brother has Azoospermia. Him and his wife would love to start a family.  My friend has had several miscarriages and although she is positive about life, she is doubtful she will ever be able to have a baby herself, which is heartbreaking.  my friend kim can not have children, many of times shes had miscarriages and the amount of pain ive seen her in is unfair as she would do anything to had children of her own!  My lovely sister in law has struggled with this and this is out with her control . Being able to have funded help would cha he their lives and chances of having children.  My sister has pcos and may need this help in the near future  Not me personally but I have seen the stress and the impact of that on friends who have had fertility treatment to try and conceive  One of my daughters was devastated by not being able to get pregnant and her marriage failed partly as a result of the stress caused by it. A close friend (age 40) and her fiancé are at the moment distraught that they cannot conceive naturally but can’t afford to pay for IVF.  Significantly as one of my friends has had 4 miscarriages before an ectopic resulting in tube being removed.  Son and wife needed treatment due to zero sperm count  Very stressful upsetting time for a close family friend  Watching someone you care about a lot go through the mental stress of worrying about the cost of IVF and if it will work first time or not is one of the worst and most upsetting things I’ve witnessed

21 Unfairness of postcode lottery

 Infertility affects much more than just relationships! It will be all consuming for those peoples present and feel like it is taking away their future. NHS offers full support for any one who falls pregnant. In their decision to continue the pregnancy, pregnancy, birth and all different journeys (good and bad) after that. However when someone has had their decision taken away from them, there is not enough support. Fertility treatment is often described as a postcode lottery! It is one of the most beautiful and precious things the NHS can give to a couple  It had been a very difficult year for me and my husband. With finding out we had no chance of having our child, mentally this has been very difficult for us. Physically when you have waited 30 years to be a mother, to find out you can't afford treatment to carry your own child has caused me to struggle with this acceptance.  It has had a huge impact on one of my close friends, who not only had to deal with discovering that she could not conceive naturally but then that she could not receive IVF on the NHS because of where she lives.  It has not affected me personally but I feel strongly that people should have access to the same treatment wherever they are in England.  It means I probably will not have children. The NICE guidelines recommend three rounds of IVF. Our one cycle will cost us nearly 10k, clearly self funding three rounds is insanely tough especially when time is short. The postcode lottery is disgusting.  it put a huge strain on our relationship and personally I felt horrendous when I found out the issue was to do with me but given NHS funded IVF meant we were given hope and that was amazing. Now we have a 7 month old son.  It’s devastated our lives. No one can explain what it’s like knowing you won’t be able to have a child as we can’t afford it. However if we moved 5 miles up the road our life would be different  my best friend is having to self-fund IVF since Cambridegshire doesn't cover it.  My daughter aged 35 lives in Cambridgeshire & would love to have a child but cannot get funding. Major disappointment & unfair relative to other areas.  My poor friend has been trying for years she can't get funding here so just has to keep trying. I think everyone should be entitled to the same.  My sister lives in Cambridgeshire and is not able to get IVF on the NHS when others can, depending on where they live.  My son having to pay over the top when other places have it  Not sure where to start. Seeing friends and family falling pregnant around you and knowing you need help is saddening beyond belief, let alone then being told you have to pay for the treatment. This is something which should be the most natural thing in the world and yet we have to put a price on our babies head. I understand it costs a lot for treatment but surly 1 cycle per couple should be granted across the country, don’t we pledge equal opituities in the UK? It really doesn’t feel like it.  Someone very close to me is trying to get IVF And I feel they have the right to have it funded by the NHS  They are very sad  This give’s people a chance to be a mother or father and tried every way possible or have had Ethiopic pregnancy. It give them hope that a chance I there to have a baby

22  We had two funded cycles with icsi. We are lucky to have one child through a funded cyle. We have paid for FET with our remaining embryos total cost around £7000. Wife had severe OHSS after 2nd cylce, clinic didn't want o know, luckily NHS was there to save her life. Relationship wise it has caused problems as we both would like a second child but it seems increasingly unlikely to happen due to our age. Webare eternally grateful for the funding we had. It should be fair access and not down to postcodes or the actual gp surgery you attend.  We have friends who require IVF. i do not believe that their postcode should mean that they have less of a chance of having children  We have had two miscarriages and are currently trying to conceive. I know we may need to access fertility services in the future which we have started to save money for knowing that funding has been cut in our area.  We required fertility treatment - ivf should not be a postcode lottery.

“Devastating” impact on their lives

 destroyed all hopes of starting a family  Devastating.  Devastating. Life-changing  Devestating  Difficult  Difficulty falling pregnant due to PCOS  Heart breaking  I have suffered with undiagnosed infertility since becoming sexually active 15 years ago and no pregnancies until last year denied ivf funding on the NHS and unfortunately in October 2018 suffered a horrific ectopic pregnancy resulting in a removal of one of my tubes. I feel I am never going to get my chance to have my own baby and it breaks my heart as it's all I have ever wanted. Me and my partner cannot afford private funding and after losing our first and what feels like our only chance of being parents is devastating for the both of us. Losing a baby to ectopic after being turned down for ivf on the NHS due to my partner's age at the time just feels like an even bigger loss to us  It impacts quality of life, relationships and mental health  It is one of the hardest things I have ever had to deal with. Not a day goes by that you don't stop thinking about it. Being a mummy was all I ever dreamed of and when that is taken away from you, you don't know how you are going to move forward.  It’s been hard and put a lot of pressure on everything!!  It’s utterly devastating. Your whole life and relationship becomes clincal. Everyone around you are having babies with ease, and you continue to feel empty. Your life has no purpose. Losing babies is soul destroying and to know after losing a baby you could be trying for another three years because the NHS cannot and will not help you is overwhelming sad. Where is my right to a family like everyone else?  It’s very difficult to put into words. It feels like a trauma. It affects me every day at work/working relationships/damaged my relationship with family members, and put massive strain on myself and my partner. It continued to do so and this is never over, it had gone on for years. I work hard and I try my best but the upset and anger that I can’t get help to have a family of my own is unbearable at

23 times. Trying to explain the hurt and pain we go through is so difficult. It has added stress, has been a factor in exacerbating depression and anxiety for both me and my partner.  Stressful and heartbreaking.  Terribly  We just want a baby it’s been 13 years  Hard

Suffered from financial stress

 3 years ago my wife and I managed to conceive on our 2nd round of NHS funded IVF at Bourne Hall. After 5 years of trying for a baby, it was the end of a huge burden that we had carried. We were so happy to be able to get the treatment for free on the NHS. We have since managed to have another child naturally. If the funding was not there, my wife and I would have had the money available to privately fund around 4 or 5 cycles. However, not having the financial cost, meant the experience was less stressful than it would have been. I think it is hugely unfair that this treatment is not available to those who are not as affluent as us. IVF should be available to all, and means tested. The discount should depend on the number of cycles attempted, income levels of parents, and age of mother (or other factors which decide success rate). By having children, my wife and I are happier, and less likely to suffer psychological problems, which were beginning to emerge during our time trying to conceive.  As a lesbian, if myself and my partner can't have a baby with a sperm donor, IVF will be the only way we can have a family. This is so important to a lot of people. By these cuts happening, you're depriving people who want to be parents, the ability to do so!  Being a fertility specialist nurse I have seen hundreds of lovely couples go the financial stress as well as emotional turnmoil if the financial worry is taken away then their lives could be changed for the better  I feel at least one round of IVF should be an option on the NHS for people who want to start a family. I would like to have children in the future and if I required IVF I'd appreciate some help in funding as it would be difficult to fund it entirely myself.  It is hard enough dealing with infertility without having to deal with financial strain that is caused by treatment  It’s devastating. Knowing that I won’t be able to access IVF on the NHS if I need it makes every failed cycle of natural conception even harder to deal with.

Having a genetic condition still did not result in help

 Its been extremely difficult. My fiance lost a baby due to Meckle Gruber and it devestated him. He feels he is being punished. It has almost got in the way of us because its something we both want so desperately. Failure of Clomid was a massive dent in our mental health. We both feel useless.  My wife and I found out that we both had existing conditions that meant conception would be difficult. I had sperm mobility issues and my wife (it turned out in the end) had a tumour in her pituitary gland that was increasing the production of prolactin, tricking her body into thinking she was pregnant already. I'm fortunate that I have an excellent relationship with my wife, and we're able to talk calmly and rationally about most issues. This really tested us though. We cared about each other's physical and mental wellbeing and it was clear that it put a strain on our ability to maintain the equilibrium we needed to make good decisions. We felt rushed and guilty that if we

24 didn't make decisions inside the timeframe that would ensure treatment on the NHS, that we may never get pregnant. Staff at the Bourn Clinic were fantastic, and the counselling they referred us to was brilliant - and just what we needed. We still haven't decided what's right for us, but we at least know now that we don't have to make immediate decisions.  Partner is infertile due to cf gene

Secondary infertility stress

 Difficulty in ttc over last 3 years but ivf isn’t an option as cost and previous conceived but had mmc so drs won’t refer. Also family members who have had to pay for ivf as no option but cost them £10000. Luckily they had inheritance to fund but will only ever have one child.

Went abroad for treatment

 A very close friend of mine was unable to conceive naturally. She was told funding was no longer available to have IVF treatment under the NHS so fundraised to travel abroad for treatment. She had one cycle which was successful and now her and her husband are proud parents to newborn twins

Other

 I don't know  rather not say  Best friend needs treatment  I was lucky to conceive our daughter on our 4th fresh icsi cycle back in 2010.  I've had to have iui for my first son and my sister has had ivf for both her little girl and her baby she is pregnant with now  Made me more appreciative of things  No effect  Took my Aunty 7 years to consider 22 years ago

25 APPENDIX E: SURVEY PARTICIPANTS’ ADVICE

What advice would you give your younger self regarding fertility treatment?

Ask more questions, push for answers and testing

 Ask more questions earlier  Do everything yor specialists and doctors say; Be quietly positive; Don’t be afraid to politely push for tests and read around your problems e.g.endometriosis and polycistic ovary syndrome  Do the things I did, the NHS takes a long time, keep being patient, you have to keep yourself informed and understand their systems, I would not do anything differently  Do your research first and know what to ask, typical response always seems to be the very least rather than what's best for patient  Don’t give up. Keep trying, my Twin boys are now grown up men, the journey was definitely worth it  Don’t leave it so long to get some tests done  Don't be afraid to quesiton what you're told by medical professionals.  Don't be nervous about them. Just find out what is happening and then make decisions from there.  Don't wait and keep pushing for tests that were missed. Don't let it ruin your life.  Get fertility checked as soon as I noticed a change in my cycle (menopause started aged 30ish)  Get tested earlier, never thought it would happen to me!  Get tested sooner  Get yourself refered quicker and don’t ignore it  Have tests earlier in life.  I don't think I'd give myself any advice as I feel that we've chosen the correct path by waiting until we were ready (regardless of my age). It's just a huge shame that we're experiencing unexplained infertility, and we don't feel there's anywhere for us to turn for answers that's been provided to us by the NHS.  If I wasn’t on the pill I would have been diagnosed with endometriosis earlier and could have gone for tests earlier  Keep pushing. Keep going. Ask more questions to why I have not had a child and don't get palmed off. I fought hard over the last petition bit threw negligence on the NHS part I was 3 months too late to get it.  Mine was cancer related. I wish options were more widely shared  My age had nothing to do with needing help to conceive, I’ve had irregular or virtually no natural cycles since 16 and my partner when tested had more abnormal sperm counts than average. Clomid worked on 2 occasions for us but I miscarried on both occasions.  Never listen to the nhs  Please just get tested  Push for answers sooner, you know your body, don’t be fobbed off with the “it’s because you are overthinking it” answer you had to deal with for 2 years before being taken seriously

26  Push for more tests  Push harder to get referred earlier  Save and push for answers instead of accepting that there is nothing more the gp etc can do  Seek it out sooner. My endometriosis would not have been found if it wasn't for my infertility and now it's too late for me to get pregnant naturally.  Start early and be more assertive with GP - waiting and see what will happen is not an answer  Tell doc you've been trying longer than you have as they told us to wait a very long time after initial tests. Be prepared for an extremely stressful and invasive journey.  That the nhs fertility tests are not in depth enough prior to ivf, which actually results in wasting nhs money when the cycles are funded. Also puts couples through unnecessary heartache when they haven’t got to the bottom of the couple’s problems. The initial fertility tests we had prior to our funded ivf cycles were too basic, eg. The sperm analysis didn’t pick up my husband’s dna fragmentation. So a cycle tailored to that instead of basic ivf would have given us a better chance. I would say to my younger self to get as many tests as possible done before putting yourself through the ivf process. We found out about the dna frag by paying for further tests privately before embarking on our self funded ivf after we’d used our ivf funding.  The testing takes forever, start the process earlier!  To get fertility testing done at a early age  To listen to your body! I have been in pain for many years and doctors said i was ok I was just struggling with IBS. I should of not stopped seeking help to get the correct diagnosis. I learnt to live with the pain but it got a lot worse and I seeked further medical attention. One doctor listened to me and I was referred to the hospital. I am now nearly 29 and I’m so desperate for a family for me and my husband. I also just want to say it’s so important to find the right support for yourself and your husband. Infertility can be very isolating and make you feel like your on your own. So the right support and knowledge is essential.  To not let yourself be fobbed off by people telling me to keep waiting.  Treatment decisions aren’t fair, but they aren’t a reflection of your self worth. You are not on your own. You will get there, you don’t need to worry. But it’s ok to cry, there is no shame in where you are, it’s hard but miricles do happen.

Don’t wait

 Don’t get hung up on marriage before children and to enjoy it.  Don’t let the GP tell you to give it time 2 years into issues. Trust your body and know it’s not right. Save money, you need IVF.  Don’t wait until late 20’s to start trying  Don't wait so long to start trying  Don't wait too long  Fo not wait  Go for it!! It will change your life in so many beautiful ways (if it works)  I knew something wasn't right so we started trying earlier and age and time is key.

27  If you want a child start earlier dont wait as they say My age is the reason IVF didn’t work not given any medical reasons when I stared at 30 years old.  It’s very lonely and long, try earlier than you want one.  Knew of potential fertility issue (PCOS) so wish we’d started trying sooner. Don’t delay, get help ASAP if there’s a problem.  See a doctor ealier  Seek help from GP earlier as I am now at the mercy of other people who don’t see the human story behind these cuts. I have limited time left to have a family. Circumstances were out of my control so it wasn’t the right time for me to have a family, it wouldnt have been a good environment. But if I had gone ahead I may have gotten pregnant/gotten IVF treatment and so I would now have a child. Now I am stuck as despite everything i can’t get help to get treatment.  Seek help sooner  seek it earlier as we nearly missed out  Start sooner  Start trying for a baby younger  Start trying sooner, or lie about how long is been trying as this would have got us NHS treatment!  Start trying when even younger  Start younger! Around 30 not 34.  Started the process a lot earlier  To keep healthy, keep weight down, try not to stress about it.  Try earlier when funding was available and prepare yourself for extreme heartache  Try for children earlier or have the option to be tested for infertility  Watch what you eat and remember that there is others out there going through the same and your aren’t alone.  Wish I had started ttc when I was younger, instead of waiting until I was 34!  Wish I tried for a child sooner x  start earlier  Self fund fertility tests earlier and start trying sooner  to have tried much earlier. However the situation was never the right time.

Journey is disjointed

 Ask more questions. Specifically: ask about the whole process of referral and your options at each stage. We were living from appointment to appointment and not understanding what the outcomes of each test would mean and what our options were at each stage. Insist on having a named contact at each place you're dealing with, with a direct dial phone number - we were passed from pillar to post all the time, I spent far too long phoning down a list of numbers trying to find the right person to speak to to get questions answered or to chase up appointments that we were waiting for.

28  Doctors will always try to fob you off. Do your research as GPs don't have the right information. Cambridge IVF are very disorganised. Ask questions.  Don’t go to hinchinbrook hospital as they were no help  Trust your instincts if something doesn’t feel right. Don’t wait to speak with your GP & try not to blame each other as a couple. Have faith that there are others like you, and that good doctors will try their best to help you become a parent.  Try and push for treatment earlier, we trust the experts and the time it takes to see any results is a long process. The doctors/consultants needs to listen to the patient, I told one consultant about an operation I had only to be told no I hadn’t as we don’t do that! Why would I lie it’s all in the notes which is another thing the consultants don’t read properly.

Admit you have infertility and get support from others

 Be aware to not be frightened of admitting when fertility is an issue  Don't be afraid to admit when times are emotional ly hard and seek professional help for mental health for this journey  I'd advise myself to speak more to others going through the same as me.  Read everything you can. Investigate all the clinic options you are given. Go to a support group at the earliest possible point. Talk to people about it.  That it is far more important to consider the psychological implications of fertility treatment, than just the physical. Take all of the support that is offered, go to counselling, prepare yourself for an emotional journey.  Think about it sooner. Don't be afraid to talk about it  Try sooner

Save for treatment

 Start early and SAVE!!  I would have advised myself to have saved every single penny i had spent on a new top I didn't need, that extra snack I brought with my coffee at Starbucks and to have walked to places instead of driven. If I had done then maybe I would be in a better position that I am now in. We saved up alot of money, I went to work self employed at home ready to give a suitable home to a baby. However with 3 miscarriages and 2 ectopics (I'm pretty much infertile, my remaining tube is so badly damaged) my mentality is easily snapped. Some days I just spent an entire day crying because I'm desperate for my own family and for something to wake up for. My boyfriend brought me a puppy and without that "baby" i dont know where I would be now. I would have told my younger self to have not continued to try and conceive naturally after waiting 2 years for the NHS to reconsider. If I had not conceived with my last ectopic I wouldn't be as distressed as what I am now. I wouldn't have cost the NHS 2 ectopic surgeries/Councilling. Please reconsider IVF. From all my heart I just want my own family. My only option is IVF. But I'm now 30 and time will not be on my side.  It doesn’t always happen naturally and I wouldn’t have children if I hadn’t had IVF but had to have two jobs to pay for treatment.  Save and save. You think after paying into the NHS for years and years that you would get the assistance required but the CCGs let you down but not following the guidelines.

29  Save as much money in case you need it for this  Save save save and lose weight earlier!  Start early, dont wait, push for thing nto happen quicker.  Start saving as you will receive no help. I’m young, no issues were found. I was offered no help because I conceived naturally after two years trying but lost the baby so our stopwatch started again. We conceived again nearly a year later, but owing to hospital negligence they missed an ectopic pregnancy, which ruptured and I lost my tube. Thankfully we conceived again with one tube, but even with the losses I could get no help. I would have paid privately had I got the money and known this beforehand.  Start saving money - but otherwise you don’t think that the chance of being a mother wouldn’t happen, and could be taken away from you because of funding cuts.

Don’t give up

 Don't ever give up.  Don't panic  I would never have the happinesses in my life if not NHS - result say everything.  Never give up!

Lose weight

 Start earlier with tests, keep weight down  Make sure you are at the correct weight or otherwise you will wait long time

Stop pill earlier

 Stop the pill a long time before you actually want to start trying.

Try not to let it dominate your life

 Be prepared, enjoy the expierence as it will stay with you for the rest of your life! And you'll have a amazing child called Teo who you thought you could never have.  Highly recommend it however should have more funding from NHS  I have started at age 25 to really get help which I feel is a good younge again so I would say I’m glad Iv started the age I have. Its been mentally draining and Iv become a little excluded from friends and family so if any advise I could think of would not let it get me down and not let it take over my life! While we are saving we are having a break and it’s nice to feel like me again :) xx  Relax and try not to stress out over success

Freeze your eggs

 Freeze your eggs

Move

 Move to Norfolk so that you can have treatment funded. Cambridgeshire do not care about you.  Move to Scotland

30 Other

 There is no right to have a child, children are not neccessary to happiness, defining yourself by needing to have children will be very destructive for your offspring should you have any. Fertility treatment in the UK is in 90 percent of all cases an immoral and selfish waste of money. Producing furtehr burdens on an overstretched p[opulation and deliberately leading to a downturn in much needed adoption. Counselling is needed for many and 'fertility' centres are selling services and not incentivised to give proper unbiased advice, this is evidenced by this survey. Which is at best 'leading'  There is no advice to give none of this is in my control

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