Update on my petition - 2064 signatures but we need more!

[Wendy39]

Here's the update I posted on my petition.

If any of you haven't signed it yet, please do.

"I thought it was time I provided an update on the progress of our campaign.

As it turns out the Review of my application for IPFR (funding for an out of area referral) that was rejected, is not a review of the decision itself but a procedure to ensure that the correct guidelines and protocol were followed in making that decision. So the refusal of funding for me still stands. It’s very disappointing to say the least that despite my Lupus Specialist’s request that I am referred to his NHS list in England for further required investigations before my medication can be reduced and despite his letter of support, this is not allowed to happen. It’s very disappointing but to be expected.

The IPFR/Referral Management Team have clarified the system further for me. You have to prove that you have exhausted all local options, this includes all the Consultant Rheumatologists in the Hywel Dda UHB area, so at Withybush General Hospital, Glangwili Hospital in Carmarthen and the Prince Phillip Hospital in Llanelli, of which there are 5 Consultants currently employed.

Additionally there are Rheumatology Consultants within Wales to whom those 5 consultants can make tertiary referrals when deemed appropriate. So once you have exhausted those 5, (none of which are lupus experts), you can then look outside of Hywel Dda UHB. But even then, it’s a referral to Rheumatology in the next Health Board catchment, i.e. Swansea (Abertawe Bro Morgannwg UHB). You would then have to get that Consultant to agree to a referral to England, if they thought it was necessary. So that would be 6 referrals in total to Consultant in Wales, before they would consider you being referred to outside of Wales.

Only when all services within Wales have been exhausted will they consider referrals to England.

But England is where all of the Lupus UK Lupus Centres of Excellence are.

I know this is long winded, but I wanted to demonstrate how difficult it is to get a referral out of area out of Wales, to those Centres of Excellence in England, for Lupus patients in Pembrokeshire.

We are chronically ill, suffering life limiting symptoms every day and we are expected to jump through numerous hoops and deal with all of this bureaucracy, before accessing the best doctors for our rare autoimmune illness. The current average waiting list for a first appointment with a Consultant is approximately 4 months, so if you were expected to see those 6 Consultants, to exhaust all local options, this process could take years. (If you can get them to agree to the referrals in the first place.)

In England, lupus patients can request a referral from their GP to a specific doctor at a specific hospital, it’s their choice. They have that right. So they can pick as close to home as they want or as far as they want. If their first choice doesn’t work out, they can then pick a lupus doctor elsewhere.

So is this system fair for us in Pembrokeshire and Wales as a whole? No it is not.

Cross-border health arrangements between England and Wales were a focus of the

House of Commons Welsh Affairs Committee in 2015. A key recommendation of this

committee was that England and Wales need to maintain close links to ensure that

patients receive the treatment they need, regardless of their country of residence.

The then Minister for Health in Wales, Mark Drakeford, stated that patient needs must

come first and made a commitment not to allow the border to become a barrier. This

commitment is not being met for us in Pembrokeshire. There is a huge barrier to us getting out of Hywel Dda UHB alone and then we are referred to the neighbouring University Health Board.

There are serious borders & barriers in place preventing us lupus patients being able to access quality, specialised care.

Please keep sharing the petition with your friends, family and work colleagues.

This situation is not fair or just and must be addressed as soon as possible.

Thank you for listening.

Wendy

"

change.org/p/secretary-of-s...

[KayHimm]

One of the problems that you seem to be encountering is that there is no recognized lupus training in rheumatology. That does not mean there are not doctors who take a special interest in, treat and do research in various aspects of lupus. But, as far as I can tell, there is no formal additional training as in blood disorders within oncology. When your health board indicates you have to exhaust all options within your area, they simply look at the list of rheumatologists. There is a good article on the value of lupus specialty clinics and why they may have better outcomes for lupus patients. The author advocates for studies to be done to substantiate the better care. My guess is that is the only way the Wales NHS will be convinced that lupus patients should have the option of being treated at a lupus clinic in England.

[maggielee in reply to KayHimm]

Hi Kay, How do explain without sounding negative towards you & not the 'system'... this response is about the system that Wendy has articulated to me quite well & I will joining her to disagree with our treatment by NHS..

Writing on how I feel about this process (& expressed by other patients/support members here) we have been dealing this system for years.... some members are released from specialist care, leaving the care to our overworked GP's to manage their (mine) complex illnesses/diseases & some members are moving to England or leaping there to seek specialist s that see& treat these diseases on a daily basis, not once a year for 10minutes, if at all. Some members are critically ill & can't wait for a year, yet along months to see a specialist.

Some of us get to see a doctor interested in dermatology and or interested in rheumotology not even specialising in these fields yet along specialising in rare diseases.... Wendy has gathered us together with the kind support of Lupus UK & we realise that a similar pattern is emerging & it makes you want to cry when they/we are suffering more than we need too and that our medical specialist are almost non-existent if at all....

I have found that our only part-time rheumatologist now is off

long-term sick, my dermatologist interested in dermatology is retired, there is a possible dermatologist in one of the other hospital s, not sure if I will be referred to them.... The rheumotology dept. is being overseen by a specialist rheumi nurse (trying to talk t o her by phon e) & a doctor interested in rheumatology. Gosh and I am now experiencing pain that relates to Trigeminal neuropathy, a new one to me & it's daily...

So open the gates on the border & support us to see specialists (thats the Welsh government/NHS). locum are very expensive...much cheaper to have are rare disease group have back to back appt for a couple of days with a specialist from England to examine us, make recommendations & every one would be happier.... Cheaper problem solving all round.....saving on gps hospitals, complex complications from lack of care. It will helps us, our families & community we live & work. 😊

By the way I am leaping the border again to see a specialist as I cannot afford to get worse & miss any more work & I am just hanging on...... ML

[KayHimm in reply to maggielee]

I think we are in agreement. What I was saying is that my view is that lupus specialty clinics will be shown to provide better care total care — with access to all sub-specialists — and that may help those of you who are getting sub-standard care in Wales. Studies may show that lupus patients need access to specialty care such as the centers of excellence that exist in England. Wales may have to provide centers of excellence or allow patients the option of going to one in England. The best way to get changes in a system is to demonstrate patient outcomes are better or that there is a cost savings. It certainly does sound like lupus patients in Wales do not get anything close to the care you should be getting. Have you thought of advocating for a lupus center of excellence in Wales?

[maggielee in reply to KayHimm]

Thanks for feedback, A bit frustrating waiting for a call which I don't believe will help me i.e. the nurse who is not currently supported by a rheumatologist.

There is a problem with NHS recognising that we need one i.e. a centre of excellence, or at least a specialist we can access in south-west Wales area, thats a 2-3 hour driving radius, instead I will drive 5 hours or more starting the day before to see a specialist, at least I can...just haven't had chance this past year....and things are getting worse...

Somehow they, the management, think we are ok & being treated....so why would need to a specialist in lupus, sjogrens, etc. yet need a centre of excellence...that they don't get....😕the

Long day, best get off my soapbox & join the Welsh/Scottish awareness raising - just been juggling alot....onwards😀😴

[KayHimm in reply to maggielee]

The article in Rheumatolgy News is titled « SLE: Specialized lupus clinics may offer superior quality of care.” You have a good case.

[Wendy39 in reply to KayHimm]

Thanks for the tip

[Hidden]

Wendy the same applies to us in Scotland - and worse in some ways as can’t even get a referral out of our health board area here. Needless to say there is only one rheum with a special interest in Sjögren’s in Glasgow but no way I’d get to see her unless I relocated again. My rheum is good but she has clearly no expertise in Sjögren’s. And she explained at a BSSA group talk last year that she is finding it harder and harder to get dentist’s who will do lip biopsies now so up to 30% will go undiagnosed.

Rather than testing by biopsy for small fibre neuropathy (SFN) now, neurologists just guess diagnose, or worse still, diagnose it as part of a so-called functional disorder. And the only expert in the UK for SFN is in London and is NHS only.

Of course it’s far more expedient to diagnose people as having functional disorders than it is to send them to London on the NHS. And this close-nit community of Scottish neurologists mostly stick together of course. Which makes me angrier than anything!

So, inspired by your ongoing battle in for people with Lupus in Pembrokeshire and Wales - and out of sheer disgust for what I see as a human rights issue affecting people here too, I’ve decided to see my MP. I only get 15 minutes with him a week tomorrow so will be sticking to Sjögren’s and FND. But I will definitely email him a link to your petition afterwards x

[misty14]

This is so unjust Wendy that it's got to change!. Fingers tightly crossed someone will see sense for you and Wales!. Keep fighting and as well as possible. Xx

[Jhpc]

All the best Wendy in highlighting your case in Wales, hopefully things will change for the better...the sooner the better x

[ExtremeDuvetDaze]

Oh Wendy, this struggle you have is so frustrating and upsetting , it really is shocking, You shouldn’t be having to go through all this on top of being poorly, your courage and determination in this fight for what should rightfully and freely be yours and others in the same boat is truly admirable. I’ve shared it again with many so fingers crossed 🤞, I hope things will change for the better really soon.

Sending hugs, take care

Diane 🌺