A second opinion and Wales again: Hello lovelies, I... - LUPUS UK

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A second opinion and Wales again

Hello lovelies,

I've been absent from the group for a while, owing to stuff. At my last rheumy review, I was advised that although my condition is deteriorating, so that I'm now housebound, there was no evidence of autoimmune flaring and so no need to change treatment - "see you in 6 months".

I decided to seek a second opinion privately and saw Dr Patrick Gordon - a specialist in myositis - at Kings Private (cheaper than seeing him at the London Lupus Clinic - money saving tip there, chaps!) The upshot being that he would like to take me on as a NHS patient, ordering MRI, repeat EMG, and lung function tests on the way.

Last week, I discussed this with my GP, who warned of the unlikelihood of getting any of this done (owing to the internal market in the NHS, which has caused Wales to restrict cross border referrals - as you'll know from Wendy's fight). So I am now waiting for a response to Dr Gordon's report from my local rheumy.

This might be of concern to quite a few people, so I'll keep you posted of any progress. Meanwhile, stay well! X

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Fingers crossed. But you know - I'd get someone to move me!

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🤷🏼‍♀️ Agreed 🍀❤️🍀❤️🍀❤️

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🥰❤️🤗🙏

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I do hope you are able to get the help from Dr Gordon. It must be so stressful waiting. Hugs xx Meg

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I am keeping everything crossed for you that you get your NHS referral. You have really been through enough already. Meanwhile take care, Lou xx

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Hello! I've been away too owing also to 'stuFF'. So nice to see your update on my return. And, my! How resourceful and creative you have been in finding another way through! I know there could still be hoops, but I have the same hope for you as all the rest do here.

ps. If no joy, Man with a Van is not a bad idea...?

Panda x

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So glad you got a second opinion, Whiperit. I know there are strict regulations about seeking care across boarders in the UK. In your case, though, do you think an exception could be made on the basis of the level of your disability and rarity? If the doctor in London can argue that they have a new treatment or that you could qualify for a study, might that make a difference?

Really rooting for you. You deserve a chance to see if new treatment could help you.

Xk

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Thanks, KayHimm

In view of Wendy's experiences, it seems unlikely - so long as there are other rheumys in Wales, my condition is unlikely to be seen as so extreme as to warrant a cross-border referral. It'll be interesting to see how it plays out x

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Well, when I was housebound with autonomic dysfunction that set off alarms. So I think you are considered extreme in terms of functionality. Have you seen a letter from the rheumatologist? She may have indicated reasons for your needing to be at a center with expertise in myositis.

Hoping it works out.

Xk

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I find this whole situation disgusting!!!!

I’ve heard wonderful things about dr Gordon.

There should be no need for a fight 😡

I hope all goes in your favour xx

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Dr G seemed pretty good. He detected my muscle weakness on examination, which is very obvious to me, but which other clinicians have been unable to find (and of course, they take their 5 second pull-me-push-you exercise as more reliable than my word). The most striking thing was he pointed out that after the acute phase of my myositis had passed, I should have had a MRI and lung function tests to assess damage done and how far there is ongoing damage, rather than relying on CK levels only, as my rheumy has done. He was particularly worried about my lung function, as I have obvious risk factors like prolonged immobility and a history of interstitial lung disease. but surely it shouldn't take a special trip to a London specialist to think of these things!? x

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I have suspected Myositis and having just read your reply I’m also concerned at how many of my fluctuating symptoms are being ignored.

I’ve had tests done on my better days, emg and lung function yet on my bad days I can not walk and talk at the same time and struggle stairs and standing up straight.

It is very rare Myositis which makes you wonder if your every day rheumatologist knows the signs and knows how to manage it.

I really hope you don’t have a battle on your hands xx

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Actually it does sound like the doctor had clear-cut reasons for doing the tests. If that is the case, maybe your GP will order them even if the rheumatologist disagrees with the referral to London. It seems to me you have a strong advocate on your side who is coming forth with convincing evidence.

I am unfamiliar with the UK system. The one analogous situation is when Americans have to demonstrate that a certain out-of-network doctor has a skill that doctors on the insurance panel do not have in order to get covered. Sounds to me like you might meet that bar.

Xk

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Unfortunately, my GP has already declined to order the tests himself as he does not feel competent to interpret the results. Dr G of course, cannot intervene except if paid by the local health board (who will obviously be advised by my rheumy) or me. I dont need to tell you how expensive the latter would be!

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Oh, I see. Let’s hope your rheumatologist is reasonable. If the myositis specialist thinks he has something new to offer you, your doctor owes it to you to get you the care.

So sorry you have to go through this. Illness is hard enough.

Xk

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if its not in the bloods fit as a flea , apparently, I think not !!!Yes your post monitoring has been very poor but sadly appears to be normal. As for an examination what is that ? Very cross today thinking about you. xx

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I am in exactly the same boat trying to get a referral organised to the Autonomic Clinic in London.

I had already been referred to a CoE in Liverpool testing for Behcets , and the outcome among the other conditions that I have had diagnosed ( not Lupus ) was that I have Secondary Dysautonomia with POTS but need tests to rubber stamp the type on my records and to get the right medications.

If I lived in England they could have done it from their clinic automatically , but because Wales is funded independently the referral has to be done by the GP or another specialist in Wales ( devolution is not the success story for the sick that it is for the healthy!) .

My GP , ironically , wrote to the Clinic in Liverpool "England " that they can't refer patients outside Wales !!! This is not true !

They just don't like to do it.

All Welsh patients have the right to be referred to services outside Wales if the care or tests they require are not available in their own area .

They have to send you to the nearest Unit that specialises in what you need , often , especially when a resident of North Wales the nearest Unit ( in distance or travel time ) is over the border , sometimes London, rather than going on a trek to Cardiff or Swansea .

The GP, or Specialist , just needs to be more committed to getting you the best available and appropriate care over consideration of their budgets or laziness over paperwork.

If someone from Wales has already had funding to an over the border Unit authorized by Welsh NHS then you also automatically have the right to the same consideration under the rules.

It is really simple for your GP or Specialist to check with the Referrals Unit .

The WRU has a set of lists available to Professionals online according to the knowledge of my ENT .

One list allows the Doc. to automatically refer from their clinic with no added paperwork .

The second , that needs signing off but is in regular use , that involves a quick extra check and an added form to be printed off , again taking minutes for the Surgery to organise.

The third , which may be your requirement , involves putting in an individual request to the Referrals Service for funding to an external Unit when there are services available locally but the patient may be better suited going to a service that is more Specialised to their Case . This is also necessary if there isn't a local Specialist for your condition but nobody else has been referred out of Wales to that particular Unit for care before.

You may have the referral denied but can appeal on it.

You definitely have the right to request ( politely demand !) your local Specialist or GP applies for this funding to get you care elsewhere with a Specialist that is willing to take your case. If you Doctor disagrees , then they are not telling the truth and just can't be bothered to have to do the admin or don't want extra cash leaving their budget ( very often the case!) , or they don't understand the Welsh Referral Guidelines ( often the case too!) .

If you have been accepted by the Specialist in London and do not feel you are getting satisfactory or appropriately equivalent care to other people in the UK from the local services available to you (and you want to go ) you have the right to try and get what you need now.

You may get it signed off in a few weeks , more likely you may need to wait months .

You need to be prepared to wait and chase them up. I'm still caught in the red tape and could be for months for my needs , but at least I know , unless things become an emergency , when it is sorted out I'm going to get the correct help and advice alot quicker

, and , won't need to keep spending years with worse symptoms or more diagnosis issues because local services are dealing with areas they don't fully understand.

It is worth trying anyway , Good luck with it .

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thanks Bleary, that is helpful. It's a battle one could really do without when one is unwell isn't it? Hope you get some resolution quickly x

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Yes , I am, unfortunately, always having to say , " There's nothing that makes you feel more ill than trying to get well!"

It is terrible that despite all the leaps forward in Care , for all the different types of Diseases on these forums, that it's members are made to feel like this everyday , and feel they have to fight against and are made to feel worse by the system that is meant to make them feel better .

I wish you lots of luck and energy too and let's hope we get the help we deserve very soon xx

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Yes! It is tragic that advanced countries cannot care for their people. Many Americans have envied the UK health care system because it is universal. Now we read about the problems. And I hear it first hand here. Chronically ill people have it very hard, and that is unfair burden.

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Yes , unfortunately people have not got awareness of the fact that access to NHS services , even for a UK citizen from devolved Countries has turned into a two tier system.

My daughter is working in England at the moment , and is even being denied access to normal GP services , because although you can usually sign on as a visiting patient if you go to other areas in your own Country , she is being told that they will not take her on because she is from Wales and getting her treatment funded is too complex. She needs to go in during work hours to fill out a outside area funding application that will need to be processed before she can even make an appointment to see a GP , not very useful for anyone who actually needs to hold down a temporary job.

She was also refused access to Out of Hours at the hospital for the same reason, despite requests from NHS direct by phone for them to see her.

In the end , she rang her Mother whom ordered her Migraine medication as a purchase from a credited online pharmacy to arrive the next day so that she could finally get back to work , pain and nausea free!!

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Sounds like a nightmare. We have horrendous problems in the U.S. too. Our problems are more related to insurance companies and access to care.

I think you mentioned that you are being worked up for autonomic dysfunction. Would be happy to share experiences. I have autonomic dysfunction — wasn’t easy to diagnose.

Best of luck

K

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Yes , that's right , I might just follow you if that's alright and then be able to pick your brain , and offer a bit of moral support in return as these symptoms are very hard on daily life aren't they?

It's the reason I need to go to a Specialised Clinic because most Departments that should work in Autonomic Medicine ( Neuro/ Cardio / Endo) have no idea what to do or how to treat it. There are very few experts in any Country of the UK , most of them only in Cardiogenic POTS and syncope , and only two centres for the whole country , both in London with the full knowledge of what needs testing.

Meantime , I'm stuck unable to leave the house alone , or do any real physical activity which is reducing my muscle mass and causing my joints to pop out and increasing my injuries by the month.

Are you also a person who can say that ," Standing Still is my Cardio!" ??😋

I was thinking of contacting the charities to see if they could work together to set up a Dysautonomia/ POTS forum on HU so people could get easier access to advice and support from other sufferers .

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Oh, you are severe. It seems clear you need to go to a specialty clinic. There is a dysautonomia center where I live. I would certainly do anything to help if you can use your insurance here.

Message me.

K

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I'm in Wales , UK , so I would only be able to drag my feet through even more months of waiting for confirmation on referrals, then appointment dates , or, I am close to dipping into my savings to go there privately just to have the final conclusions rubber stamped .

I have a first appointment with local Cardio next week , as the Clinic in Liverpool were the ones to diagnose Secondary Dysautonomia and POTS that requires confirmation as to what is the root cause. Funding and lack of speciality meant that they couldn't finish the tests themselves . If I get the usual confused look and feel like I'm talking to a wall and that Consultant does not sort the referral out on the day , private it will be.

I've already had a year now with self care techniques having no impact on my symptoms and the impact on my daily life and other health issues is huge , I can't keep waiting just to support the system anymore , it's not supporting me.

Thanks for the offer though and I hope I can keep in touch 😘

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What a stupid situation. It could be dangerous too xx

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I think my fractured left ankle and torn Achilles would be inclined to agree !😋😂😂😘

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Thanks very grateful for the information. xx

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Oh Whisperit, keeping fingers tightly crossed you get the OK for referral to dr Gordon's NHS clinic!. If there's any justice you should get it on the grounds that myosotis is a very rare condition, your housebound and your regular Welsh Rheumy has already demonstrated he can't look after you properly as he's missed these tests you should have had after your treatment. Weren't you right to get this second opinion and really hope Wales NHS gets its act together soon for all your sakes, Wendy's group too!. It's shocking what your all having to go thru. Do hope the insomnia has improved!. Xx😊👌🏻

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Thanks misty. Insomnia is a bit hit and miss - some nights not too bad, others bad. It does seem to be a function of general illness rather than a thing in itself x

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Does make living with it hard though Whisperit. Can you predict which nights are better or worse or is it random?. Maybe if you can get your general health better the insomnia will improve!. Do hope you get good news soon. X

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yes, sleep quality does seem to be secondary to how Im doing with other symptoms, not the other way round x

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Hi Sadly I am not feeling optimistic about a referral to london.

wendy's specialist there (london) also offered to put her on his nhs books & wales nhs refused..... So she is back to writing AM's & MPs....

If your GP is agreeable, ca n you get the necessary tests done & have them read& make recommendations? Much cheaper to have tests done & ask for specialist expert ....

Wishing you well....hug ml

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thanks. my GP surgery is a large one, and it has proved difficult to find a GP who is both sympathetic and available - my last 2 helpful ones both left on maternity leave this year, so atm Im trying all the others to find one I can get on with! x

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Wishing you well & luck with the gp....we are just hanging to ours here, worse in other parts of the county.....ml

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Yes good idea. I too was offered to go on London Nhs but could not. Some time ago now . xx

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It has really helped me with my tests in hand to see specialist outside this nhs out of desperation & I am in a better place now health wise....

They are sympathetic in England to our lack of expertise here...which is a blessing & my lovely gp just wants to help too just frustrated with the system etc... ML

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yes you explain where I am with this too. I am lucky too have great gP. XX

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My gp has been a great spirit lifter & we have a good laugh together (if I cry she knows i am in a really bad place)...

I am so grateful to her to keep me going.... & I imagine many others....ml 😁

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Hi, I live in wales and totally share and understand your frustration with the lack of care and understanding from my local hospital... see you in 6 months!! I was referred to Manchester royal infirmary it’s a lupus center of excellence under the care of Dr Bruce via my Gp. Since being there I have had more in-depth tests in 2 months than I have in the 6years I was under my local hospital! As there is no specialist care for lupus in wales there was no need to apply for funding.

My Gp wrote to Dr Bruce with my information and I received a letter to go and have a consultation.

I highly recommend telling your Gp this is what you would like to do! Best thing I ever asked for!

Good luck! Xx

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thanks - good to hear youve had success. x

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Well done so good to read someone get the help they need. xx

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This is not the case sadly with our nhs & now will not refer us to the one 'expert' in the neighboring nhs as he doesn't feel he can take any more on & is offering to help other than advice to our rheumy who has taken on some 30 of us......or more.... Work in progress & Wendy has been a superstar to get us this far i.e. a a rheumy willing to listen & take advice....just not enough knowledge....ml

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Yes wendy has been amazing. xx

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*sigh* flashbacks to the time senior officials fled in droves the day the Department of Health became NHS England. Until then, although Wales had, in theory, their own GP system and regulations, they hung around for a month and copied exactly whatever we did for the GPs in England. The very strict internal market scuppered that.

That doesn’t help you much Whisperit. I’m so very sorry you’re left in the lurch. Your history here shows a steady deterioration in your health while you desperately tried to find help.

I’m saddened and very, very angry. Cyber hug xxx

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thanks Lupi. Hope you're doing OK x

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As well as can be expected! I now have to treat my dog four times a day for a doggie autoimmune eye problem, very similar to my Sjögren’s eye problems. Just as well I’m very close to housebound or we’d both be in dire straits x

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It good to know a few have been able to seek experts outside wales....

i just want to feel confident in their judgement & experience here & keep on going day to day.... Wishing you luck with your surgery..ml

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When we get to a stage where very poorly and struggle to leave the house we deserve better and a chance to see an expert is not to much to ask . xx

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Good to hear from u whisperit!!

Omg this sounds like an episode from the prisoner!! Wales ain't that far from where I live in the Midlands n yet??...!! Xx

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Whisperit— it sounds from what others say that there is a possibility you will not be allowed to attend the specialty service in London. I had a thought and wanted to share it. You might want to be prepared to talk to the specialist you saw about his advice regarding a myositis expert in Wales. Doctors who have expertise in rare disorders often know one another. He may even have trained someone who is now working in Wales. I don’t know how strict they are about going outside your area of Wales, though.

Really hoping there is a path forward for you.

Xk

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Hang in there and thx for the update. Prayers are going out to you

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I'd implement that 'paper' address in London and show one finger to NHS Wales...having started work in England (while paying more in taxes as a Scottish resident LOL!), I'm figuring a way to English 'residency' for proper health care, to dodge the NHS geographical disparities aka postcode lottery our health depends on

Willing all the very best for you...and post as much as you can xxxx

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