A possible lifeline for members in Wales

[PMRpro]

In case you haven't heard this, it is said that Labour plan to allow patients in Wales to travel to England for treatment. Hopefully - although a bit of a pain having to travel - it may let people have access to a proper rheumatologist at last. It has been particularly difficult in the south in the past.

theguardian.com/society/202...

[Blearyeyed]

Patients in Wales have had the right to travel for NHS treatment in England for decades if the appropriate treatment is not available in Wales , I do it myself for treatment for my Migraine conditions , and when I was being tested for Behcets ( which finally got me moving forward on getting diagnosed for conditions other than Behcets that had been affecting me all of my life) this could be arranged more easily because it was offered via a Centre of Excellence , centrally funded which meant it cost Wales no additional money.But that is were the problem in the system begins.

Although you should be able to access cross border care it's virtually impossible to do so if it will cost Trusts additional money to send you there , especially for conditions which Welsh NHS Trusts can state they have Specialists for ( even if those Consultants have no previous experience or first hand knowledge of treating the condition itself).

There is a system in place called the Cross Border Referral Scheme , but getting on to it and being considered takes great effort by the patient , and they usually need to know this exists in the first place because GPs either don't know about it, or they are very resistant to apply for it because they are encouraged not to because of the costs involved to the Surgery and the Trust as a whole. Plus, it's very hard to get any information about whom to speak to or complain to if things aren't being sorted out for the patient because information is so hard to get hold of. As a patient whom is currently in this situation I know because I've tried.

Even if you finally get a cooperative GP or Consultant whom is willing to do all of the paperwork involved to get you treatment across the border , or to apply for treatments and medications that aren't offered as standard but are available via application to a special fund in Wales , getting a decision on this can take months , if not years, and often will be a refusal because the Trust can state , for example, that a condition , such as PMR, is treated by Rheumatologists, we have specialist Rheumatologists in your area in Wales , so you have access to appropriate Consultants and don't need to elsewhere.

At the moment , for example , I was prescribed a Gammacore Vagal Stimulation Device by my Neurology Unit in Walton. It should also be available on application to be funded by my own NHS Trust . The applications were put in by both my GP and Consultant in June2023 to try to ensure funding was in place by the time my free three months trial finished, We are still waiting for approval of that funding and no nearer to getting it despite regular chase up letters from my doctors. Luckily, because the situation was so ridiculous, and my Specialist at Walton knew I could be left for sometime without this additional, vital treatment the people at Walton decided they would fund the device out of their budget for me until Wales had organised the funding. The funding is still nowhere near in place despite the fact that units in South Wales can already provide these devices automatically.

I should have been able to get referred across border for EDS and Dysautonomia testing at specialist CoEs because there are no specialists units for these conditions, or Consultants with experience of treating these conditions. But this would cost my Trust additional money , unlike the Behcets unit which was free,

Because if this I have still not received approval for this cross border treatment, because according to the methods used by the scheme m which will not change under new legislation they can use the same excuse. Rheumatologists diagnose these things , Cardiologists diagnose these things , we have them in Wales so you can get diagnosed by those Specialists,

Even though you can find it virtually impossible to see a Rheumatologist in Wales and they refuse referrals from the GP for EDS and Fibro diagnosis and my Cardiologist freely admits he must work with me to get things right and could do with some more help.

The solutions they are discussing are already in place and aren't working , just talking about it won't change anything, sadly, for patients in Wales.

[PMRpro Ambassador in reply to Blearyeyed]

YOU might have been able in North Wales but a friend of mine with very complex lupus was refused permission even to travel to Cardiff with her rheumy when he moved there (his idea she should go with him) because an appropriate doctor was available locally. This "appropriate doctor" was a GP with a special interest in rheumatology. And then HE disappeared too. She worked with the Health Minister on it but got nowhere.

It is to be hoped that having identified a problem, they might discover it is bigger than they think and push a bit harder. Though can't see Bristol/Bath being overjoyed.

[Blearyeyed in reply to PMRpro]

The Behcets Clinic way back in 2018 were really apologetic, if I'd been a patient from England they could have referred me from there straight away to go to the Dysautonomia Clinic in London, but as they said because I came under Wales they couldn't do it without permission from Wales. I know a person on the Lupus forum whom has been through what you describe too. It's the same across Wales and in other regions. It's the same system everywhere across Wales, so most people find what they did and can't go to another Welsh district to see the same doctor if they move for the same reason.

The point is after healthcare was devolved in the regions they knew that getting financial approval for referrals across borders would be an issue which is why the Referral Schemes were set up. It's not the schemes that are at fault it's the way they are being used that is the problem. Trusts and the Referral Boards all use the same excuse for denying specialist care by stating they have Rheumatologists etc. and they treat those less common illnesses so you don't need a referral across border because they already have provisions. They don't take into consideration that those conditions may come under a particular department or area of medicine but that most Consultants within that field don't have the experience of treating something or the training in doing the right tests to diagnose something which is less common. The Consultants then either muck up the diagnosis or treatment by arrogantly muddling through it themselves or put in cross border referral requests that never get answered or get denied.

It's got nothing to do with medicine it's all about money. It's obvious , because otherwise it wouldn't be so easy to arrange via a GP to be referred when you have a condition whose Centre of Excellence is free for all areas of the UK as it was with the Behcets Clinic.

Unless Central Government makes all Specialist Centres centrally funded for use by all Regions for free the provision may be available but the local systems won't refer patients without a fight.

In North Wales there used to be a relatively ok relationship between Wales and Chester which meant that if you were waiting more than what was classed as acceptable they would send you to see a Consultant or to have surgery over there. But then the prices became marginally higher for the same treatments or appointments over in Chester than they are willing to spend in Wales. The Welsh Trusts would not accept that they would have to pay for services at the same cost as any English trust would have to pay for the same service. Eventually Chester had to say that they must pay the same or they would have to start refusing patients , of course they wouldn't pay so the ability to go to Chester was suspended.

They've known how large this issue has been for years. Much like the Dental Service the problems England has only just started to get Wales has been suffering for decades. They can't even blame the Conservatives because Welsh Labour or Plaid have been in charge of making these arrangements . The Assembly believes it has a fair system in place because they turn their heads away from the fact that it isn't being used properly to save money ( to be honest they probably actively support the lack of use to keep Health costs down too) . Getting Labour in charge in Central Government won't make any difference to that because they have no authority over the choices in the regions.

The size of the problem is easy to cover up though because, let's be honest , most new patients don't know they have the right to be referred elsewhere and most patients with experience of the system aren't well enough to try and find each other to mobilise and demand the treatments they should be receiving.

[IlovePorridge]

I am in South Wales and see a wonderful rheumatologist in Bridgend. I recently attended an appointment held jointly with rheumatologist and respiratory consultant (both relatively young women) to discuss my conditions; Sjorgen's Syndrome and ILD. Before the consultation, they had already spoken with my gastroenterologist to gain his opinion on their proposed medications. This joint working has improved my care tremendously. It took several years to get to this point but better late than never. My newish GP has also been wonderful. She has listened carefully to me and acted swiftly to refer me for testing and further investigations. I know there is much to improve still, but credit where it is due.

[PMRpro Ambassador in reply to IlovePorridge]

That is great - and good to hear Bridgend has at least 2 very enlightened ladies on their team. This latest generation is improving things - and how original, fancy TALKING to one another about their patient!!!

[piglette]

My brother in law went private living in Swansea, as it would be years of pain waiting for the NHS appointment, but he had to go to Cardiff to actually see a good consultant.

[whitefishbay]

Always looking out for us. Thanks!

[Body_bonkers]

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