Legal action

[charlhene]

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?

[Alaine1]

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

[charlhene in reply to Alaine1]

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

[emmab178 in reply to Alaine1]

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

[Sez73]

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

[charlhene in reply to Sez73]

Thank you very much

[Hidden]

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.

[Heloo85]

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!

[NW248]

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.

[Alaine1 in reply to NW248]

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

[NW248 in reply to Alaine1]

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.

[Heloo85 in reply to NW248]

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!

[SEB88]

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.

[aimeewils]

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

[charlhene]

Wow very passionate thank you

[Alaine1]

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.