Legal action

Hi all, my friends/family think I should seek compensation for my delayed diagnosis. I've been in and out of hospitals for abdominal pains since as far back as 16yrs. Before I was actually diagnosed I had to force them to search for endometriosis. They say that it's because not many people seek legal action that these institutions fail to take things seriously. I want to do this for the future suffers which can be any girl/ woman I care about, but I have doubts and fears. Any thoughts?

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  • Unfortunately there are too many of us in the same boat. I suffered for the same length of time and longer for my adenomyosis, IC and now suspected Fowlers syndrome diagnosis, but I personally feel that it's more important to educate both doctors/medical professionals and the public. All suing does is take money from local nhs trusts that are already struggling which will have a knock on effect for all services including cancer, it may also mean that there is no money to open/keep open a specialist endometriosis centre in your area if you were successful and could potentially open the flood gates for other claims. I personally doubt legal action would be successful and I very much doubt others would want to take legal action against nhs trusts. I dislike my local trust but I have the option to not use them and I exercise that right for all referrals and treatment . The hospital(s) involved in your claim might turn round and say that there was nothing that stood out to suggest/support a diagnosis of endometriosis or that you hindered your own diagnosis in some way by being uncooperative. I don't think the nhs or a judge will see that you are trying to do this to speed up diagnosis for others as they would probably argue that you could raise awareness by working with your local hospital raising awareness or via the Endometriosis UK charity, raising money etc. A judge could in theory refuse to even hear the case. I would hope/imagine as the nhs is asked to support even more patients in the coming years there will rightly be a huge clampdown on payouts to patients except in very extreme cases. I'm not sure what other people's opinion are but I think your energy is worth being used to help yourself on a day to day basis and seeing what else you can do to raise awareness as I think legal action will rob you of this, not help your pain, create more stress and possibly for little/nothing in return. At the end of the day the money won't necessarily make you feel any better and it won't make your life any easier. It might give you a few hundred pounds? But such a small sum of money would simply be an insult- it wouldn't represent the struggle, pain, hospital appts etc. I know I have waffled a bit but I hope it makes some sense (?) xx

  • Hi thank you for that, it was very insightful 🙏🏿

  • I agree wholeheartedly with this response except for one thing. The trust have insurance policies for claims. Any money received would not be taken from care, it would come from insurers who if after multiple claims could slightly increase premiums that would be a cost.

    My neighbour was a medical negligence secretary for a legal team who did these cases. She pretty much said no chance in a case unless it's death or loss of limb etc and it's so difficult to prove.

    So unfortunately raising awareness and trying to use your experience to help others get diagnosed quicker might be a better use of your energy for outcome and benefits to others.

    Unless you have specific evidence ie a lap where a general gynaecologist said no endo and a few months later a bgse specialist found severe endo. Then you can at least raise a compliant about a specific case where hopefully it's investigated and learnt from so that others aren't treated in this way

  • I considered the very same having been in a similar position, but you know what, I thought about it a lot and just knew it was going to bring so much extra stress an worry and a positive outcome was not guaranteed. I wrote personally to my GP practice outlining how very badly they let me down, making me feel it was all in my head and my symptoms didn't exist, that helped get the words out on paper, and I stopped there because I knew it would be futile trying to get compensation, they'll always find a way to wriggle out of responsibility I find. The best advice I'd give would be to use, what is sometimes very limited energy, and use it to its best potential in keeping yourself strong and fighting to find the best treatment from here on in. Looking back can be negative, you have your diagnosis now, so take back the control and forge ahead seeking the best specialist treatment for yourself. It is very noble to want to fight for others, I felt the same, but I soon knew what fights were worth taking on, and that wasn't one of them. Keep your energy for your own fight and don't use up your reserves on institutions who should have known a lot better. Best of luck to you. x

  • Thank you very much

  • All medical practices have a college that their part of, it's often called "The college of physicians and surgeons of *where you live*"

    They act as a governing body which you can report doctors to.

    They can place restrictions on their practice, force a physician to take more courses to better understand treatment and keep them up to date, make them go to therapy. They'll give you a letter of apology.

    However I don't think you can be compensated financially for reporting to them, I'm sure however that if you spoke to a legal representative or someone there they might be able to direct you to a better reporting body.

    Unfortunately I had to use it to report physician sexual assult by a gyno, I'm in Canada but I believe there are 3 different routes that they chose from to persue your case.

  • Unfortunately the biggest problem the NHS faces is underfunding. It always has and always will. Taking money from the pot will in fact make the situation worse! We have all had delays in diagnosis because it takes surgery to diagnose, and surgery is risky for everyone, not to mention the added problems of causing adhesions that at one point could become life threatening. Drs always have to balance risk vrs benefit and sometimes yes they can get it wrong, but who knows what your health would be like if you had your first surgery 16 years ago and one every few years!? My dad's cancer surgery saved his life but nearly killed 16 years later with a strangulated bowel, then in the end left him malnurished and inoperable, leading to early death. It's out bodies fault we're ill, not the Drs. That's my take on it!

  • The fact that endometriosis isn't being diagnosed soon enough is costing the NHS a huge amount of money with repeated tests for other things, numerous scans, visits to GP's and consultants etc. People have tried to make the NHS more aware but we don't seem to be getting anywhere. Maybe a class legal action is the only way to push them into action. It would get publicity and there could be an out of court settlement that would entail mandatory training for all health care staff to make them more aware of the condition and a better process for referring women to endometriosis specialists. There also needs to be more clinics, it is about a 3 hour journey to my nearest, if I'd have got any worse I wouldn't have had any way of getting there.

  • Unfortunately there are plans to actually reduce the number of centres for endometriosis as the number of severe cases was in fact over estimated and most cases diagnosed are stage 1 or 2 which these centres weren't designed to be accessed by. The only time stage 1 or 2 was originally to be used by patients was if symptoms couldn't adequately be treated by a general gynaecologist or if there was adenomyosis present which also in many cases require specialist management which these centres can treat in addition. There are initiatives being established to help screen which patients would benefit the most from surgery and a specialist referral and those that can be adequately managed by general gynaecologists/GPs. Perhaps in future it won't be necessary to operate on every patient as tests will become available to accurately detect stage and location of disease if present and surgery will only be offered to patients with stage 3 or 4 will the remainder will be treated using medication with is effective for pain, symptom control etc. So it will be like many conditions that only those with severe disease seen at specialist centres. The other option is to make these centres not only endometriosis centres but centres of excellence for pelvic pain. The centre I'm under the consultant who is absolutely brilliant is also a pelvic pain specialist so can diagnose other conditions that are present with no endometriosis or alongside which is invaluable

  • But most GPs and gynaecologists seem incapable of diagnosing endometriosis at any stage. I wasn't diagnosed until I was 47 having suffered since I was a teenager with symptoms that were severely affecting me any time that I wasn't on the pill. Yet no-one managed to diagnose me, it wasn't even suggested. I was repeatedly told that ultrasounds showed that there was nothing wrong and if I had any sort of growths it would have shown up.

  • All diseases are grouped together with symptoms similar, and all of them take process of elimination. For example a cough could be a viral infection, bacterial infection, asthma, copd or lung cancer! Every disease will cost a fortune to diagnose. Drs are aware, hence why they put people on the pill to deal with period issues.. With early endo, that is safer than surgery as see what happened to my dad 16 years post 1 abdominal surgery. And yes keyhole makes it slightly safer, but it's not safe!

  • As much as i would love to take legal action against the gen gynea that did my surgery, i am not going to. She contradicted herself twice in my surgery report and her lack of knowledge on endo was shocking, given that the first consultant that saw me told me it was endo and he has lots of experience with it. And when my results came back she still wasnt sure!

    As others have said it will remove money from a stretched system and add stress, which does not do endo any good. I like the idea of a class action that would be more likely to get changes.

  • i had a similar story with problems from the age of Nine

    eventually diagnosed at twenty three. Hysterectomy by twenty eight. Having probs again now & feel not listened too & declining quickly as a result. Go for it if u have the fight in you x

  • If there are plans to reduce the number of specialist centres then clearly appropriate referrals are not being made. We know from support groups how many women are being left decades in many cases, being managed on hormones and pain meds, only to turn up with severe disease down the line. Evidence suggests that endo is becoming more aggressive, especially in the young age group, and would point to a need for more centres, not less. Women having to wait up to a year for complex surgery in some centres certainty suggests a greater need for proper treatment.

    And that brings us to what is 'proper treatment' and in general terms I think we would all agree that this ultimately means being seen by the right person and in the right place with the appropriate knowledge to diagnose correctly and in a timely manner. And this has to start with the GP. We know that so many GPs still seem to know so little about endo, especially the symptoms of deep disease, that should be picked up but are so often diagnosed as IBS with the woman left perhaps years until they are so incapacitated with their insides severely damaged that someone takes notice. And they have rarely eve heard of BSGE accredited centres. This has been the case for decades and has not changed since I started with symptoms in the 80's. It should be unthinkable that such a lack of progress could be made in what is known to be pretty much the most common gynaecological condition. The ESHRE guideline has an entire section for GPs highlighting this failure to diagnose properly and clearly laying out what they should be looking for, but still the message doesn't get through. Even if women are lucky enough to be referred to a gynaecologist there can be a lottery as to whether they are knowledgeable enough to carry out a diagnostic lap as thoroughly as it should be done. We see women all the time being told in general gynae that they don't have endo only to have severe disease finally diagnosed down the line.

    If it is indeed considered that there are not as many severe cases as anticipated then it would seem clear that this is likely to be because they are still not being properly assessed and referred on. The RCOG makes very clear in its recent Standards for Gynaecology Care that surgeons must only operate according to their level of training, highlighting the requirement to refer on to tertiary centres when appropriate. It is made clear what the consequences will be on surgeons who do not do so and that complaints must be taken into account in annual appraisals in a way that can affect their ability to practice. This huge and comprehensive document puts great weight on the need for gynaecologists to operate within their training and on the requirement to refer on to specialist centres in a way that seems to indicate a keen awareness of failures to do so. Currently any data that could be used to determine how many severe cases there are can only come from those operating on the few cases that are correctly referred and not those that are inappropriately left in general gynaecology with severe disease. And so such data would be meaningless until steps are made to ensure that severe disease is correctly identified and referred.

    In my view this can be achieved only in two ways. Firstly, identifying the extend of the problem and this can only be achieved by women reporting each and every case of a GP and gynaecologist failing to treat properly to the appropriate body who sets the standards. I firmly believe that change can only be made if those failing to apply standards are made accountable individually a way that could potentially affect their ability to practice should they continue to make the same identifiable failures. And secondly by introducing an intermediate level of gynaecologist who is trained to recognise the symptoms of endo, especially those indicative of severe disease, which is all so clearly laid out in the ESHRE guideline already.

    Unfortunately legal action isn't the way to do this because not only is it necessary to prove 'negligence' which can be the easy part, but to prove 'causation'. And that is usually virtually impossible as you have to prove that you have been irrevocably damaged by the actions of a medical professional, and in such an unpredictable condition as endo that can progress regardless of any amount of medical intervention, it is not something they would take on.

    Ultimately 'awareness' in the way it is usually meant is unlikely to do any good since there seems little point in trying to make the public aware of how women are being failed if women themselves are not prepared to make those directly accountable who are failing them. We in the UK may shy away from complaining but complaining to the right people has to be the way to go as we would to any other service provider who has failed to deliver what we should expect according to regulated standards.

  • Wow very passionate thank you

  • Unfortunately this is the plan to reduce the number of centres which was mentioned at an event last year I attended with the BSGE, specialists etc. Yes there are problems with many centres but there are people who are unfortunately getting referred to 2-3 centres and continue to have a negative laparoscopy and absolutely no evidence of endometriosis even when operated on by the best specialists. Pelvic pain is caused by many conditions as highlighted at an event I attended today with specialists from uclh, Edinburgh, Oxford endometriosis centres along with researchers in the field. At these meetings the level of commitment from endometriosis specialists, pain specialists, women's health physiotherapists is amazing. One consultant who battled to get a pelvic pain clinic running had to run the clinic in his own time free alongside the other committed professionals. It was only when the hospital saw it was beneficial they finally agreed to fund it. Many of us don't see the huge sacrifices many professionals in the field of endometriosis and pelvic pain make on a daily basis. Many GPs, medical professionals and patients fail to realise that ongoing pain may not be due to endometriosis but to other pelvic pain conditions not previously diagnosed/considered

    There are many reasons endometriosis may becoming more aggressive in the younger population although many studies do not back this up but unfortunately many teenagers are extremely overweight which is know to be a risk factor for many hormone based conditions including breast cancer but also increases the exposure to oestrogen. Some of these studies have potential problems with their design methodology which makes interpreting these results difficult or at the very least caution should be used

    The nhs unfortunately is under enormous strain and all specialties have stories of people not being diagnosed until too late. It's not only seen in women's services and I doubt with the level of funding, patient expectations the nhs will be able to continue unless people are told it's going to become an insurance based healthcare system with only those affording the best coverage having access to the best specialists in centres for endometriosis, cancer etc. I for one would probably welcome this - the system works very well in many European countries. The other alternatives are that everyone has a pot of money each year which you can use to access care, medications etc or everyone has to pay a certain amount each year. But with Brexit around the corner the nhs may collapse anyway if our valuable European nurses, doctors and other medical professionals aren't allowed to stay in the UK. The nhs simply doesn't work for everyone at all times and with the current demands us and others place on it. But despite my extremely long wait for diagnosis, fighting with the GPs to be heard and to be referred to an accredited centre I hold no grudges against the incompetent general gynae I was kept under for 2.5 years. Yes my health has suffered extensively from endometriosis and my other diagnosis but it's simply not helpful for me and my journey now is more important in helping to promote endometriosis and pelvic pain awareness amongst the medical profession and the public.

  • We are aware that there are many causes of pelvic pain but we are talking about endometriosis and the failure to diagnose correctly. Multiple potential sources of pelvic pain is another discussion.

    In particular we are concerned with GPs and gynaecologists failing to take notice of suggestive symptoms, carrying out appropriate investigations and failing to refer on to specialist centres when appropriate, leaving severe/RV disease to progress when it needn't have done.

    Taking legal action against medical professionals should be reserved for only cases that have caused significant harm, but women should not be dissuaded from such a course of action if it is truly warranted on a basis of preserving NHS funds. Obviously such settlements come out of insurance and the NHS provides its own and has money set aside just for this purpose and builds up a pot of funds that are not available for other areas of the NHS. Clearly if there are serious failures then taking a legal course should cause them to address the failures and improve which in turn will save them money by acting properly in future. Anyone who feels this is incorrect is clearly missing the point. In the scenario we often find ourselves in - individual GPs and gynaecologists repeatedly ignoring guidelines and not following correct procedures that would have led to more timely treatment and more appropriate care - then they need to be made accountable and prevented from repeatedly applying the same failures that are costing the NHS vast amounts of funds. To knowingly not hold a grudge or wish to complain about an incompetent general gynaecologist and thereby allowing them to repeat their failures time and time again with other women in itself could be considered irresponsible of a patient. This is not so much about the 'complaint' but the opportunity that must be taken to allow them to address their failures and improve. Complaining about a wrong doing with the only incentive and intention being to preserve the safety of other women in future is the responsible action.

    Whilst estrone (the weakest oestrogen produced by adipose fat) can be converted to oestradiol and released into the circulation, being overweight is likely to be of more concern in post menopausal endo progression than in women of reproductive age with fully functioning ovaries that are producing vast quantities of the much stronger oestrogen, oestradiol. The aggressiveness of endo is linked to aromatase expression rather than oestrogen, as is seen in the rare and extremely aggressive post menopausal variant of endo associated with oestrogen replacement HRT that is reported as having 'extraordinarily high levels of aromatase'.

    I have been asked to publish a reply on behalf of Mr Chris Dyer, Chair of the BSGE Endometriosis Centre subcommittee, in response to the claim that numbers of endo centres are to be reduced. This is confirmed as incorrect with a statement:

    'As part of the Endometriosis centres project it is our hope and aim to ensure that women with endometriosis are seen by appropriate clinicians in a timely manner and we expect this to improve as the centres develop'.

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