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Ehlers-Danlos Support UK

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Does anyone get nhs reviews of their EDS?

bluecar15 profile image
8 Replies

I'm talking annual check up type thing. By secondary or tertiary care rather than a gp (mine is fab but has neither the time nor knowledge to help me here). I deal with most of my health myself. My pain is mainly managed via activity pacing and physio. I use some painkillers as needed to ease the pain a little but have come to terms with the fact that my pain isn't going away and that we unfortunately have yet to invent a painkiller that works when taken daily without causing withdrawal effects I'm not willing to risk, damage to other parts of the body I'm not willing to risk or which become less effective over time when taken constantly. Mainly I use heat and rest.

I'm at peace with my condition deteriorating and I'd rather spend my time enjoying my life in a way that's adapted to be as sustainable symptom and health wise as possible than chasing a cure HOWEVER, I do feel that in order to do this, it's necessary for someone other than me to be motioning the progression of my symptoms occasionally and suggesting anything I can do to slow said progression/ anything I'm doing that may be worsening things (and isn't worth it! I can deal with my symptoms being a bit worse after I've had fun, dealing with a worsening of symptoms from a medical procedure that I gain no benefit from however is another matter entirely.)

I know that there's a move towards primary care and I'm happy to use primary care for most things but they simply don't have the time nor particular special interest in eds to be able to answer certain questions. Considering that over the last few years there's been a significant difference in my symptoms from one year to the next thanks to the severity of my eds/ its apparent need to progress despite me treating it very well (in my opinion lol) and doing 'all the right things' I don't feel it would be unreasonable for me to see a named consultant once a year for a review and to ask them if worsening/ new symptoms need investigating or if i need to make changes to lessen their impact. Then inbetween annual reviews, they could be a point of contact for my non specialist local providers just to check in with if they feel its necessary and check that they are working in a eds friendly direction.

I know that in some people, eds can be managed entirely in primary care and that progression comes to a halt or maybe a very slow crawl with physio and pacing, but I also know that I can't be the only one for which this is not the case! And for who, despite their best efforts, new systems keep jumping in to the mix and joining in and have them asking 'is this a eds thing? Is it OK to ignore? Or should I get this investigated/change what I'm doing'

Anyway if you are one of those people, who need a bit more specialist input, maybe directly or maybe to their local rheum/gp surgery. Are you getting it? If so can you please let me know from where! (If you aren't comfortable sharing on a online forum I get that, would you be willing to message me privately?). If so is it an ongoing thing? Or is your specialist/ team desperate to discharge you (I've seen several of the eds/hypermobility teams in London in the past but it's never been an ongoing thing. more, they diagnosed me and sent me on to the next step, the last of which was 'now you do it'. Am I doing something wrong and should be asking for appointments? Or is that the case for us all?)

I really really do see the benefit in the 'now you do it' part (honestly! I'm not just saying it) and I really do think the changes I've made to my life have slowed my progression/ made my life easier/ lessened damage but every now and again something regular in life comes up (say the dentist wants to extract a tooth) and I'm like oh, what's the eds impact here? And I ask the dentist (in this example) and they don't know, so I research (but I'm not sure) and I ask my gp (but he isn't sure and doesn't know where to ask) and I'm like... shouldn't I have a person who knows eds who I can ask? But my local rheum won't take me cause they don't know eds. The dentist (in this example) sends me to a local consultant but they don't know and they don't know who to ask. I try asking a eds team I've seen in the past but they are like 'you aren't our patient anymore'. I ask someone with eds/a charity but that's informal! It's not medical advice! And so in the end I have to decide based on my own research. Often I have to rationalise this to the dentist or whoever why we should do things differently and they are a bit ???? And don't want to listen because I'm not a dentist! I'm not a eds specialist! I'm just a person with a bad tooth! And eventually things go ahead my way or there's or somewhere in between and afterwards I'm like. This is going to happen again. And keep happening. I'm in my 20s and so many more regular health things that may be effected by eds are going to come up and I have no solution but to research myself and then decide. And honestly! I'm too close to this! Drs don't treat themselves, I don't want to be the only one who's considering eds each time. What if I'm unconscious and not avaliable to remind the surgeon I've got a connective tissue disorder and then give them a lesson on the implications of that and find out a alternative? What happens then? It might be fine or things might go wrong! What if I then have to live the rest of my life living with the aftereffect of a mistake, a oversight? I don't think I'm OK with that! It's one thing to live with symptoms caused by my eds, something I was born with, something inevitable that I've accepted as part of me and quite another to live with something that could have been prevented by a simple email, or me having been awake!

Anyway I'm not quite sure how to deal with that part. Everyday management I'm cool with. I don't want a magic solution to my pain or fatigue, I don't want to hand over the reigns of coordinating all the rubbish that comes with being chronically ill and let them fill in the forms as I sip a mimosa. (Though that sounds nice. Really nice. Even if just for a week.) But I would like someone I can email when a question about routine or emergency treatment arises (or my drs can! Imagine that! They could do the admin for their own request themselves!) and talk to once a year, who knows about eds and can offer me on record medical advice. Does anyone have that??? Is it a possibility? If so what do i ask for?? Who do i ask??? Or am I living in cloud cuckoo land even envisioning it?

So yeah, thoughts???

8 Replies
Trickysite profile image

Hi, you could get annual check ups privately if you paid for them! Dr Alan Hakim, EDS specialist. I had a 10 hour cancer operation last October and he wrote and advised my surgeons how to look after me and I printed out an A4 page In bold on what positions to avoid placing me in while unconscious and handed it to them and also blue tacked it aboVe my bed in intensive care. Most importantly, I found wonderful surgeons who did this massive op by keyhole (5 small 1cm incisions) instead of the 12” vertical cut from belly button to pubis which had been planned! That would have killed my back and tummy muscles! I had no EDS probs after op.

cyberbarn profile image

There are no annual checks for EDS within the NHS. There are very few annual checks within the NHS for anyone. The only ones that happen are ones that are mandated by the NHS and the GPs get paid for. Don't look to rheumatology, the British Society for Rheumatology's new guidelines states that they don't take referrals from GPs for hypermobility.

And even going private could be difficult as I hear some of the private clinics are closed to new patients due to so many patients on the waiting list.

The move in the NHS is to have people self caring. And you are right, how can people self care without guidance! If you want to change the system, you could start by getting involved in your Patient Participation Group at your GP surgery. From there you might be able to make connections to the CCG/ICS and influence from the bottom up to try to get more conditions to have annual health checks, but with the NHS not having enough money to provide essential services, you may have a lot wait.

The best bet is to cultivate a relationship with a GP who is interested in learning more about EDS.

bluecar15 profile image
bluecar15 in reply to cyberbarn

Thanks for your reply!! This is what I expected tbh but isn't it so frustrating! The service I've been hoping exists is just a eds version of what my local hospital offers to most patients with arthritis. Based on my family history, I'll end up there anyway eventually thanks to the damage from the hypermobility, it's just frustrating when by offering this earlier they could save money long term! Same story with everything I guess. I know you can't predict the progression but I really want to prevent as much damage/ unnecessary operations as I can early on as I've seen how bad it gets later on in life for those I inherited the hypermobility from and I've always been more symptomatic than them with a much earlier onset which does worry me! But there's no point in dwelling on what you can't change.

I can't afford private even if it is available as thanks to eds I ended up in a much worse paying job with little progression than I would have have had my body not decided at 18 it wasn't suited to lab work (the irony that eds prevented me from going in to medical research where I most likely would have ended up researching something eds adjacent, is not lost on me. I often wonder how many amazing eds Knowledgeable drs are out there unable to provide the care we are all looking for, thanks to eds!!! There are some who've managed it at least, there's some great research going on at the moment that's being led by fellow peoples with eds! Very exciting!!)

Blearyeyed profile image

Hi again,Unfortunately in the UK the system is just as the others have eloquently said.

I tried finding a private Rheumy before finally tackling the GP and it did appear impossible to find an appointment.

You could get in contact with your local EDS group.

There are lists of Facebook meetings on the EDS Society website.

They may be able to tell you which local private / NHS Rheumatologist is the best experienced one to see in your area and you can get a private appointment with them so at least you know your money isn't wasted.

If you can afford it they will usually keep you on their private list and you can contact their office for emergency advice or get annual checks if you need it.

The good thing about finding a private Rheumy with EDS as a specialism that also works in the UK is that if they see something else pop up that needs additional care , they will either volunteer to add you to their NHS list for that new set of tests or you can ask to do that. Or they will contact NHS people in other local Departments to get you to the right people for specific issues.

More importantly , a local support group can advise you on which GP they use and work well with , which means that if you can't begin a good partnership at your local surgery you could always look into moving practices for that reason. Your own surgery may even help you to make that happen if they also understand that they don't have anyone on their books with the specific knowledge your Primary Care needs.

You may be better bonding with a Practice Nurse , the one that you feel is most conscious of your condition and understanding. Then , if you feel you need to talk about some new symptoms or want annual checks you can book them with her.

You can join the EDS Society as a member and feel confident about the information that it provides as being medically correct , as most of the founding members involved in monitoring the information are or were the Specialists at the top of EDS care in the UK.

Also , ask the local support group for recommendations of the best local physio to be referred to too.

And they may also go to specific low impact Pilates or exercise classes with an instructor whom is skilled in classes for people with mobility related disorders or EDS, you could even meet some other EDS sufferers there and build some good friendships.

It wil take time , but you can eventually produce your own pick and mix of care professionals that will be more knowledgeable and understanding of your condition to help with your annual progress.

Believe , me we all feel like you. I have various conditions and I have wished I could sit back while the Doctors actually did their own research or form filling for all of them , unfortunately it hasn't happened yet. The best next thing could be sitting sharing a Mimosa with another EDS sufferer as you both sort out your forms.

Take care , Bee

bluecar15 profile image
bluecar15 in reply to Blearyeyed


Thanks again for all your support and advice, I think I've got a bit of a plan now from your other reply.

I guess I kind of knew what needed doing i just needed to check I wasn't creating more work for myself first! Plus vent out the frustration of 'why do I have to be the one doing this'.

And you are right, I need to widen my reach a bit with my fellow eds people, it'd be helpful I think, even if just to vent! That's a much more reasonable goal than drs not needing to be chased! I can only dream..

Blearyeyed profile image
Blearyeyed in reply to bluecar15

Great , glad I could help , plus you have already widened your circle by reaching out in these posts and speaking with me.I might be yet another Faraway Friend , but I have made great virtual friendships with people in different health forums on HU , some I now class as my closest friends , even if we haven't met face to face .

I can definitely talk about my feelings and frustrations with them more than even my most considerate healthy friends , as , although people can be helpful , without walking in our shoes they can't totally understand how life treats us as we live with a chronic illness until they experience something like and I wouldn't wish that on anyone ....ok , there are a few people that I know that I would love to see try to cope with my daily life , even just for a day!

You are already very experienced I can see , you have just hit the same brick wall that all chronic illness patients reach at some point in knowing it's down to them to find the info and then persuade the Doc.

I know you were hoping to find more Professional help , but to be frank , it only really helps in diagnosis or treatment of the effect of your EDS and other comorbidities.

Even when you do get to a clinic were the consultants all discuss your case together , when it comes to giving advice beyond medications they are not that knowledgeable either. Seriously , if one more doctor suggests that I try yoga ( the new medics trend suggestion for anyone ) I might just poke them in the Downward Dog. Although simple yoga stretches help , a standard or intense yoga class without knowing your limits , or without a knowledgeable teacher, for us is like suggesting to a haemophiliac to try walking through a field of thistles.

It really is finding the best EDS sites and blogs , both UK and abroad ,that will help more in helping you find a way to keep EDS managed and reduce its effects , as they have the best experience because they are living with it and making it work. Although don't get too defeated when you find that many new treatments , even cheap and simple ones , are not available on the NHS.

Why? because NICE judge them based on how beneficial they are for patients who are generally healthy and can take most medications with OA or RA, rather than making them available for the minority with orphan chronic illnesses that need extra help.

Look you've got me started now ...

Please feel free to keep in touch in the private messages if you want to , I'd be more than happy to keep in contact.

bluecar15 profile image
bluecar15 in reply to Blearyeyed

Thank you so much!!

Typicallygaslit profile image

Since my diagnosis at the orthopedic hospital in Oswestry, I’ve had annual reviews. Or at least I thought they were annual, maybe it’s di or tri as I haven’t heard from them this year. Initially I felt a bit annoyed by the whole thing as there’s clearly nothing they can do for me, but the last appointment was a video consultation (the only one I’ve had all this time since Covid started!) and it felt a bit comforting to have my condition monitored. I had sent the consultant a letter beforehand explaining specific problems and though he felt he couldn’t help in any way, he was at least supportive. I’m now trying to build some kind of network of ‘allies’ but it’s almost impossible as doctors really just want me to go away and not bother them with my complex needs. I can safely say absolutely nothing would come to me at all if I didn’t conduct my own research and tried to get the doctors to listen. I’m 56 and have mostly been self-caring throughout my life as most doctors have dismissed me as a lesser life form.

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