LUPUS UK
21,947 members17,391 posts

My Reply to Vaughan Gething 10 July 2018

Dear Mr Gething

Re: Our Campaign for Access to Specialist Lupus Care for Lupus Sufferers in Pembrokeshire

I write further to my letter dated 20th June and your response of 5th July 2018.

I have to say that I am very disappointed with your reply. It is another cold, standard politician’s letter and does not address the majority of the points I raised. You are avoiding the main issues here. Furthermore, like many letters I have received from Hywel Dda etc. you show a complete lack of understanding of lupus as an illness and the effects it has on a patient and their family. There is a complete and utter lack of compassion and humanity.

Do you know anyone with lupus?

I think you misunderstood my request to meet. I do not want to meet to discuss my own personal case, far from it. I used my own personal story as an example of the poor care we currently receive in Pembrokeshire and to explain how I came to be writing to you. I want to meet you with a group of my members (as Pembrokeshire Lupus Support Group) to discuss how badly the Welsh NHS are treating us as Lupus patients in Pembrokeshire and how we can access expert care.

My invitation to meet therefore still stands and I truly hope you will reconsider.

I also think you misunderstand the wishes of lupus patients re care as close to their home as possible. Everyone I have met is very happy to travel, if it means seeing a specialist in the field they require. I think this is a fundamental error on your government’s part. Have you ever asked lupus patients this question? It is a very big presumption to make. The standard general Rheumatologist does not have the experience or knowledge to be able to offer the best treatment plans and medication to lupus patients. Lupus patients need to see doctors who deal with lupus day in and day out. Experts. It is a rare illness that should be treated by recognised experts. People will travel further if their health will be better in the long term.

As explained to you in my letter, lupus is a specialism not currently available in Wales. All Centres of Excellence are in England. The only recognised Lupus Expert in Wales in Julian Nash but he apparently cannot take any more lupus patients on his NHS list. So a referral to England is the only option left to us then. (I would like to know also why he cannot accept more patients? Is there an upper limit? If yes, why is there? Should NHS doctors be able to refuse patients who desperately need expert help in their field?)

Thank you for the information on how the referral system works, that is very useful. However ultimately we are facing GPs and Consultants telling us that they will not complete the paper work as there is no point, they will not be approved. Many of my members have faced this situation in the last couple of months alone.

I have recently been told by Bernadine Rees that Consultant Rheumatologists in Hywel Dda tell her that no requests for funding have been declined this past year. This is not the true picture. I have personally been told that I cannot apply and I know many others who have been told that they cannot apply.

Can you tell me how many applications have been made to Hywel Dda for funding out of area referrals and approved in the past twelve months?

Can the Rheumatologists tell us how many people have asked for an application to be made on their behalf but the doctor has refused at this first point? I wrote to Rheumatology and Dermatology asking for my requests to be recorded in my notes and the reasons for refusal to even do the paper work recorded too.

So someone is not giving the full story. Someone is hiding the truth.

Is the paper work involved deliberately too onerous in order to discourage doctors from making them in the first place?

Are doctors in Pembrokeshire / Wales being told that they should not make these applications for referrals out of area?

Is there a limit on the number of applications that can be made by a Health Board?

Are they being told that the funds will not be made available, unless very high risk cases, as a way of balancing budgets and life/death situations, where you risk leaving yourselves open to medical negligence? (Maximising patients quality of life and reducing the risk of long term complications is not important and obviously not a concern).

I know someone with lupus who asked a doctor for a referral to a lupus expert and the reply was, “You must be joking, you’d have to be dying for me to agree to that!” That is a very brutal way of speaking to a patient who is ill and desperate for specialist advice. It is not a helpful way of explaining the system to a patient either. What happened to showing your patients understanding and compassion? But then lupus patients do seem to be considered second class citizens.

So, is that in fact the official line? You have to be dying to get a referral? Are you telling doctors that they cannot make such applications for funding for referrals out of area, unless the patient has no other options and is seriously unwell/dying?

Who makes the decision re the referral applications?

Is it the Consultant Rheumatologists at Withybush? If it is, then it would explain a lot. Surely the people making these decisions should be objective? Are the Rheumatologists feeling professionally wounded that we think they cannot offer us the expert care we deserve?

Are they made on a patient basis or purely a financial one?

Can I have a copy of the professional standards in relation to this aspect of the application process please?

Never mind those that are ill and need a better quality of care and could have a better quality of life with access to the right specialist doctor.

A little honesty about this whole policy and procedure would go a long way.

If lupus patients are being referred to England and Centres of Excellence from other areas in Wales, why aren’t Hywel Dda? Are they mis-managing their funds? Are Rheumatology services there being starved of funds by them? Are we bottom of the pile?

If you are currently of the opinion that Rheumatology in Hywel Dda are delivering expertise in Lupus and related conditions I can only draw the conclusion that you are in denial and/or delusional. Treating and supporting lupus patients in Hywel Dda is not the same as offering access to expert care.

Unfortunately a lot of people I have met or spoken to are actually scared of speaking out about their personal situation re lupus care, for fear of repercussions, which is truly appalling.

I am sure that if you had a relative who was very unwell and struggling with this illness your views and policies would be very different.

I am not asking you to open the flood gates on these referrals to lupus experts. My request would be that you amend your policy to give a specific exemption for lupus sufferers, so those with SLE and related conditions and those who require a second opinion where there is a possibility of a diagnosis of lupus or a related rare auto-immune illness.

So this would be a very small group of patients as a percentage of the population of Wales, with this serious complex illness, where there is no current provision of expertise available in Pembrokeshire / Wales. In this small number of cases, applications would not have to be made but presumed to be needed. Of course there might be cases with patients with mild disease, easily controlled, that do not require access to lupus expertise but it would be presumed that they could, unless the patient did not want it.

I am also asking that you agree to adopt treatment plans and medication recommendations from these Centres of Excellence only and recognised lupus experts, (as set out by and agreed with Lupus UK) only. I am not asking that doctors in Wales adopt treatment plans from just any doctor, at any hospital. Only the ones agreed between the Welsh NHS and Lupus UK.

It seems very short sighted to me that you deny lupus patients this access, as in the long term I am sure such expert advice would reduce NHS costs. Lupus patients in Pembrokeshire are currently not optimising their quality of life and I know of many that have been forced to give up work or reduce their working hours due to uncontrolled lupus. This means that they are more likely to be dependent on the benefits system, feel that they cannot contribute to society and ultimately it affects their mental health. None of this is good for the Welsh economy either. Plus, as the long term risks with lupus are kidney involvement and heart disease, to name just two, if a patient’s disease is controlled properly from the beginning the risks of such long term health complications can be dramatically reduced. Surely the costs of providing dialysis and heart procedures/medications etc. long term are much more of a financial burden on the NHS?

Ultimately, we appear to have a two tier NHS system now. NHS England and NHS Wales, with Wales falling behind. There is no United Kingdom when it comes to health care. Maybe you can explain how you think the Welsh NHS are providing a good standard of care to lupus patients in Pembrokeshire, when all Centres of Excellence are in England and you are deliberately denying us access to those centres? That alone is proof that you are not providing a good acceptable standard of care.

In England a lupus sufferers can chose where they GP’s letter of referral goes. They are also entitled to a second opinion from a Consultant of their choice. Some have 2, 3 or 4 referrals before they find a Consultant that they trust with their illness. They can in some places track their GP’s referral online. I know of someone who got a referral to Rheumatology and then realised that there was actually a Centre of Excellence closer to them and so went online and redirected their GP’s referral to the Centre. This is what dreams are made of for lupus sufferers in Wales.

What is happening to us right now is an NHS post code lottery of the very worst kind. My MPs office tells me that there are people moving from Pembrokeshire and Wales, to England to access better health care provision. Is this what you wanted, to drive people out of Wales? That cannot be helping the Welsh economy in the long term either. Are Welsh citizens not entitled to the same standard of care as English citizens? How has this been allowed to happen?

You still have not answered why Hywel Dda are not adopting the Guidelines for Diagnosis and Treatment of Adults with SLE across the board, as was the intention of the BSR?

When I was diagnosed with a serious, rare, chronic illness back in 2013, I very naively thought that the NHS would take very good care of me and nothing could be further from the truth. I have not been looked after by Withybush Hospital or NHS Wales at all (apart from my fantastic GP care). They have let me down in every way possible and continue to do so. I am now managing my care with a mix of private health insurance and private appointments. I am not the only one either, am I? There are many lupus patients paying for their own care. It has been a sharp learning curve and not a pleasant one. The ironic thing as well, is that lupus is adversely affected by stress, it can be a trigger for flares and ill health and the way I have been treated has led to periods of flares and symptoms.

I know that you cannot comment on my own situation, heaven forbid, but by way of an update on my saga, I have recently developed a patch of brown, rough, itchy skin on my face that I wanted checked out.

You probably do not know this, but lupus sufferers can be photo-sensitive, i.e. UV light can trigger their illness. I am very photo sensitive and this weather is extremely difficult to bear. Anyway, I always wear Factor 50+ cream on my face, all year around and wear a hat every time I go out, even in winter, to protect my head. Plus I take other precautions from the effects of the sun. I am at a higher risk of skin cancer than the general public and due to my maximum dosage of immune suppressant medication I am at an even higher risk.

Therefore any changes to my skin should be checked out. In fact I have heard that in this situation lupus patients should see a Dermatologist every year for a full skin examination as a precautionary measure. I have not seen my NHS Dermatologist since March 2017 (well “GP With a Specialist Interest in Skin”). I therefore telephoned his Secretary on 22nd June 2018 and asked for an appointment so that this patch of skin could be checked. I was told that he had retired months ago. I asked why I wasn’t told? No answer. I asked if I had been automatically transferred onto another Dermatologist’s list? No, their computer system does not allow it. (So presumably all of his patients have not been informed and Withybush are just waiting for his poor patients to telephone and ask why they haven’t received a check-up appointment in the post? It’s a great way to treat patients).

I explained my concerns about the patch of skin and asked to be put onto another list. I was told that she would do that, but not to expect an appointment any time soon, as what with transferring his patients and staff being on holiday at this time of year, there was a back log. Again, an interesting way to treat a lupus patient with concerns of skin cancer.

I have now arranged a private appointment with a Consultant Dermatologist as I want peace of mind.

My GP has seen the patch of skin and says it needs checking and my lupus expert in London has seen it and says that it definitely needs checking as soon as possible.

Also, at my third private appointment with my lupus specialist last week, he has told me that he requires a Neurology opinion, (on my CNS symptoms and neuropathic pain, headaches etc.) further MRIs of my brain, spine and hips and an Orthopaedic opinion and he will not be reducing my medication until he is 100% sure what my lupus disease is doing to me and that any such reduction would not harm me. He says that my lupus is currently still active.

This is a far cry from the NHS Rheumatologist telling me that the Guidelines do not apply to me and that I am mild and stable and denying me access to a Neurologist. By the way, that Rheumatologist has retired too, with no Consultant replacing her as far as I am aware. None of her patients were informed and some were discharged from her care without warning too. So some lupus patients are having to be re-referred by their GPs to Rheumatology as a result.

I have letters from both departments from the last 4.5 years since my diagnosis telling me that they are too busy to see me.

So now I officially have no NHS Consultant Rheumatologist or Consultant Dermatologist at this time, as both have retired.

It’s an “interesting” state of affairs to say the least and I am so lucky that my husband can afford to pay for these private appointments as the NHS do not seem to think I am worthy of any treatment from them, or any kindness or compassion.

I look forward to receiving a response from you on the questions I have put to you and my invitation to meet myself and representatives of our support group.

I hope that Steve Moore will himself also reply soon. I am hoping that we will meet him in due course as well.

In the meantime, I am arranging a private clinic for lupus patients from Pembrokeshire with a lupus expert, preparing my own complaint to the Community Health Council as you have suggested and exploring other avenues such as advice on these issues vis-à-vis Hywel Dda breaching our human rights to access adequate health care and advice from Disability Wales (as Lupus comes under the Disability Discrimination Act and Equality Act).

We are not going away. We have a lot to fight for and as you can see the awful, inhumane, callous way in which we are being treated is fuelling us.

Lastly, as for the Consultation Process, I think Kevin Weston should be the one you consult with, as Chair of Lupus UK. I am just a wife, mother, lupus sufferer, asking to be treated in a better way and wanting access to the expert care we deserve from our NHS.

Yours Sincerely

33 Replies
oldestnewest

I have also:

1) contacted the Hywel Dda Community Health Council as Vaughan Gething advised

2) contacted Disability Wales for any advice

3) contacted the British Society for Rheumatology for advice and/or guidance.

I will also look into the petition idea.

Wendy x

2 likes
Reply

Go Wendy! You have a lot of support here and the power of the collective voice should not be underestimated!

3 likes
Reply

Thank you so much Horsewhisper. x

Reply

All the best.

NHS hospitals are full to bursting so sick patients lie on trolleys for up to days for lack of beds. It is acknowledged in a recent official report that large numbers of these patients are there because they have a chronic disorder for which they have not been able to achieve timely care when chronic became acute - 3 or more weeks wait for a GP appointment, waits of months (at best) for specialist care and, all too often, NO specialist care. So they become ill enough to need admission.

It is utterly crackers...

4 likes
Reply

Hear hear.

Preventative measures must be more cost effective???

1 like
Reply

You'd think - given the cost of a hospital bed per day!

2 likes
Reply

A lot in the news about how much the NHS is spending on Diabetes. Psoriatic Arthritis sometimes difficult to diagnose due to lack of blood tests etc. Psoriatic Arthritis can be linked to diabetes. Just maybe if these conditions were being diagnosed earlier they might avoid their patients developing diabetes in the first place. So yes refer them and other AI patients out of area if a second opinion is needed, It might end up actually being cheaper in the long run . Lupus, Sjogrens all have links to other conditions as we know.Lou x

4 likes
Reply

If there was no private care, I would have long lost my eyesight. My vision was saved by a Man (Dr), whose NHS department was closed down (too costly to run, apparently). I used to have a decent NHS Neurologist whose post was suddenly removed to "cut the costs" to replace with "nobody", who was not gonna deliver the quality, long-term care.

It seems that doctors, who survive well on NHS are those, who think like accountants AKA his fund managers, treating patients like another piece of meat in his conveyor belt without any moments of thought that patients got a life that ought to be preserved and if he did not help the patient, it will be lost or his health would be seriously at risk.

There are decent Rheumatologists we often get to hear about. You are lucky if you are under one of these experts, either private or NHS. Also, there was another poster who said that another patient living in the USA is able to access IVIG for the same condition without any sort of problems. Of course, it's because they are paying a hefty insurance, several posters, replied. Of course. But it goes to show, there's a lack of honesty amongst NHS consultants, who simply refuse to admit that their concern is financial when it is obvious it is. They delay giving you a diagnosis, that's their first protocol, hoping the problem would somehow go away, insisting that it's not their concern. Several referrals (NHS or private or both) would have to be made over a number of years until you get that diagnosis (usually at the major crisis where one of your organs or possibly, two are at stake. But the hospital is busy bouncing the patients as fast as they get referred as if these doctors think they processed the meat nicely and FAST. How efficient of them, managers may well approve of their "hard work". Many people never get that diagnosis. NHS's tactic is only too obvious and things have been working well that way for NHS managers and doctors. But the country that treats your health like a low priority, it's not the best. NHS is a great institution but it does need to change the way they work. A site like this made it far more obvious because people never connected/networked and talked with honesty ever before.

3 likes
Reply

I think you are being unfair - the doctors are not the ones who make the financial calls. They are as frustrated as the patients.

5 likes
Reply

I do think that the doctors try their best, well the majority anyway, but they must feel that their hands are tied and hate these financial constraints. Even Dr K said to me last week that the NHS is not about what is best for the patient any more, it's all about budgets. I do feel for the genuinely passionate, skilled, kind and compassionate doctors, I am sure all of this is not good for their mental health and they must question where they are going all of the time.

Reply

I don't know a single NHS employee who thinks it is all OK - and they really are heartbroken.

1 like
Reply

Very well done Wendy. An excellent letter. Might the next step be a copy to the NHS minister of health for the UK.

As the Prime Minister has a chronic disease - diabetes how would she feel with this standard of care. Perhaps it is time to move it out of Wales as well. Take care of yourself.

Margaret

4 likes
Reply

Thanks Margaret!

Yes, I’ve seen documentaries about people moving from Wales to England for better cancer care options but you still don’t think it’s happening on your door step, but apparently it is. How sad.

My husband asked if that’s what I want to do but I can’t take my family out like that now, GCSEs etc. Plus we all love it here. I have resigned that I will continue to travel to London and if we have to pay for the neurologist and orthopaedic stuff that is better than moving. Probably cheaper too. But shocking that we have to think this way at all!

Someone commented on my other post that the Welsh NHS seem medieval and also this resistance could well be that they don’t like that we think they are not capable of looking after us. Egos getting in the way of good patient care?

Have you ever seen this article? It’s the Vasculitis UK news magazine and on page 2 & 3 the chairman’s report is entitled “What’s Up With Wales?”

vasculitis.org.uk/content/d...

Wendy x

3 likes
Reply

I have considered moving out of wales due to the health care system however my meaning in my note was to move your efforts out of Wales to Downing Street and to the minister of health for UK with a copy to the Prime Minister. Do they really understand what is happening west of Swansea. Visits to Wales get centred around Cardiff and a large University Hospital. Just a thought!

1 like
Reply

I agree with you there.

Everything is London / South East, Cardiff at a push.

But we are forgotten out here at the most westerly tip!

I will bear your suggestions in mind.

I have written a few letters and emails already this week, and drafted an online petition.

It is moving forward.

Hopefully meet you soon.

Wendy x

Reply

This is one of the problems of devolution. Devolved NHS. The Welsh NHS copies similar structures to the English NHS yet the population of Wales is 4.5% of the English population. Hence a top heavy bureaucracy that can’t even understand the problems highlighted by Wendy!

3 likes
Reply

Such a shame. It's such a beautiful place to life but the health care situation is quite frightening for many here now, enough for people to move to England. It should never have been devolved.

Reply

Wendy

It is good to see you fighting so hard for lupus care in Wales. I totally understand your reasons.

I just feel I need to add, that some of (us), patients in England, also have to pay for private treatment to get 'expert consultant' care.

Unfortunately, England or Wales - oftentimes, it is down to the gatekeeper - first point of contact - the GP, to decide if referrals get made.

I left my GP practice, after 28 years, because I had never been referred to a consultant, despite her prescribing meds for endocrine issues. Like yourself, I had a health crises, and she was as useful as a chocolate teapot.

I paid private, travelled to London, got properly diagnosed and thus began better management of my symptoms.

I changed my GP practice. R

Raising awareness of sjogrens and lupus, I provided new GP, and practice nurse, with copies of how to manage symptoms of these autoimmune disease. A complete waste of time.

It is very rare I visit NHS drs/nurses nowadays. Why? They work on a conveyer belt system. Next ......

When I get ill, its no good seeking preventative treatment, i.e. antibiotics for budding chest infection, because they are inclined to watch and wait before prescribing. Thus, despite being immune compromised, we are treated as all patients....

Rather, we have to get very unwell, then get very stressed, then get full-blown flare-up requiring dermatologist, rheumatologist, asthma nurse.... when we knew, all we needed was to get infection under control.

Health care England and/or Wales, is indeed, a lottery!!!

However, I do sincerely, wish your cause a great outcome.

Meanwhile, I will continue to pay for care I know I need, and get treatment in a timely manner.

Without the right medic, at the right time, we are vulnerable indeed. I won't take any chances.

5 likes
Reply

Hello

Thank you for taking the time to reply and explain your own difficulties with the system.

I know that not everyone in England has great lupus care but you have more rights than the welsh patient, since devolution of the Welsh NHS.

In England you have a right to a second opinion of your choice and you can chose which hospital your referrals gets sent to in the beginning. We do not have those rights.

Plus of course all Centres of Excellence are in England.

We in Wales have no automatic access to those Centres, so by living in Wales we are denied access.

None the less, I am hoping that by raising awareness wherever I and other lupus sufferers can, that we raise standards for us all.

I can only hope.

We are such a misunderstood bunch in so many ways.

I have now burnt all my bridges with local health care I fear - my card is marked! So I will be private no doubt for many years to come.

Such a shame.

Speak soon.

Wendy x

1 like
Reply

Yes, I understand the dilemma in Wales Wendy. It's awful.

England policies and guidelines are much better. However, I believe in England NHS, a lot of lip service is paid to such policies and guidelines.

My own GP, (and I changed because I hoped to get better care for my autoimmune disease), like so many, won't even refer in the first place. Hence, I feel I have no choice but to pay for what I need. And, in a timely manner.

Visits to GP really are a waste of time for me. I am fortunate to feel that in an emergency situation, the local hospital service would care for me. Meanwhile, I spend my pension on private care and treatment.

You are doing sterling work on behalf of lupus patients. If anyone can get the goalposts changed, it will be you, I'm sure.

Good luck.

1 like
Reply

Thank you very much for your kind words.

I have now drafted a petition and posted a link to it here.

Please sign and share with family and friends.

Wendy x

1 like
Reply

You go for it Wendy. Don’t let them push you about 😀🤞 x

4 likes
Reply

Thank you.

I know the system isn't perfect for many people in England, Ireland, Scotland and Wales, but the way the NHS has devolved in Wales has caused us real problems, funding seems to be worse here and the border cuts us off from the Centres of Excellence.

It's just not fair.

Welsh patients do not have the right to a second opinion and they do not have a right to a second opinion of their choice. So that alone isn't right.

I just can't accept the status quo here.

Wendy x

Reply

I don’t think anyone should accept that.

I am lucky and get seen by local rhuemy and at guys, and if it weren’t for guys I’m not sure how my care would be. But like I said I am fortunate at the moment.

Keep fighting, we are all behind you.

💪💪💪💪💪💪

😀😀😀😀👍🏻👍🏻 xxx

3 likes
Reply

That's how it should be - both doctors working together - for the best outcome for the patient - mutual respect.

Big thank you!

Wendy x

2 likes
Reply

😍 FANTASTIC COMMUNICATION!!!!!!!!

👍 BRILLIANTLY COMPOSED & WORDED!!!!!!!

ACE 🌟🌟🌟🌟🌟 👏👏👏👏👏👏👏👏👏

KEEP UP THIS VITALLY IMPORTANT CAMPAIGN

wishing i could do more than cheer you on...my ❤️ Is with you

🍀🤞🍀🤞🍀🤞🍀🤞😘😘😘😘😘

4 likes
Reply

Thank you!

Knowing you are here and you are cheering from the side line is more than enough.

Wendy xxxxxx

1 like
Reply

I think this letter has more punch than your last one Wendy - it cuts straight to the heart of the matter so very well done you! I hope it forces a less evasive and more helpful response at last.

However I do still have my doubts about your focus being only on Lupus. I actually think a good rheumatologist should be able to work with people with all rheumatic diseases both in principle and in reality. After all Lupus isn’t that rare compared to Scleroderma or some types of Vasculitis? And if the patient has a very rare presentation or the rheum needs input or advice of other specialists eg nephrologist, dermatologist or neurologist then a good hospital should be able to facilitate a multidisciplinary approach. And the NHS consultant should be willing and able to access specialist input from wider afield if this is needed - and have good relations with all the relevant charities too.

I just wonder how realistic is is to expect rheumatologists to be dedicated to one rheumatic disease alone in remote areas?

I have had four rheumatologists now and none have had any expertise in my disease, Sjögren’s. But 3 out of the 4 have been good enough and I am happy to have been under their care. I think, if I felt confident that they would refer me to a more specialist consultant in Glasgow or London or anywhere in UK if they needed to on the NHS - this would be enough for me and for most people with rheumatic diseases.

And I guess ultimately this is what you are asking to happen? However the extremes of each disease can make travel very hard indeed for some, as I know having lived in Orkney for many years and visited friends in Shetland. Being flown to and from Aberdeen at regular intervals can be a nightmare when the weather is bad re delays, cancellations and overnight stays. Some are just not well enough to do this. So it is very important that access to a good all round rheumatologist is the priority for remote areas I feel.

Also telemedicine / VC technology has a big role to play in remote areas for follow up appointments and as an adjunct to yearly/ twice yearly face to face consultations.

In your case I would think you should be under a good general rheumatologist and dermatologist locally as a priority, because you also have Sjögren’s and possibly PsA too, or very probably some kind of inflammatory arthritis at least. These related diseases should all be dealt with of equal priority by a good NHS rheumatologist I feel - rather than encouraging your health board to try to find a Lupus focussed rheumatologist. There is so much overlap for many people that I think it is very important that more good general rheumatologists are trained across the board in recognising and understanding all rheumatic diseases and are available to everyone in your area. If you had one such then you would not need to trek down to London at such frequent intervals to see Dr K privately. And better still he would be able to work with your local NHS rheum and derm.

I do find it so shocking that you aren’t even under Rheumatology or dermatology locally AT ALL???! And I think perhaps this is what I, personally, would focus on with politicians as a priority. X

4 likes
Reply

The lack of Rheumatologists are a major problem.

In north Wales the Lupus Nurse is peripatetic making it easier to link patients in rural areas to their consultant by phone and video.

5 likes
Reply

Yes this is a great national problem Kevin.

When I was previously a Scottish NRAS ambassador my rheum came and gave us a talk. He explained that part of the problem starts at medical schools where the decision about intake numbers required for each specialism is made in the south of England.

So these decision makers don’t actually take into account the geographical terrain - sparse populations spread across Highlands and Islands, people without ready access to good roads and transport infrastructure etc.

If the numbers encouraged to pursue rheumatology are worked out per head of populations as they currently are I believe - then clearly, being away from the major centres is a great disincentive and the devolved nations of course suffer the most.

Not to mention other deciding factors influencing medical students such as research funding, peer support, cudos/ reputation building, collaborative approaches quality of provision, access to new drugs and pioneering technology etc

4 likes
Reply

Well done Wendy. Fingers crossed that you'll get a more constructive reply this time, but I wouldn't bank on it. I think you have a massive battle on your hands, but we are all behind you. Without people like you the situation would have no chance of improving. Looking forward to finding out what his response is this time. Just an idea, but do you (and everyone else on here who is from Wales) think we should all write to him individually? Perhaps if he was bombarded by letters on the same subject he would realise something needs to be done.

2 likes
Reply

Hello

I have written quite a few letters and emails this week.

Looking for allies and support wherever I can.

I think anyone writing a letter of support to Vaughan Gething, would help enormously. I do fear sometimes that he thinks I am a crackpot working alone and exaggerating etc!

So if you feel that you have the time, inclination to do so, that would be fabulous!

I will get the petition finalised too - that way we can all show our support and hopefully raise awareness for everyone out there.

Wendy x

Reply

Hello again.

I have posted today with my petition and a link - please sign and share with friends and family.

Wendy x

Reply

You may also like...