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.