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LUpus Patients Understanding and Support
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Please sign our petition to help patients with lupus and other rare AI disease get access to expert care

We request that the Welsh Assembly Government remove the “Gate Keeper Principle” for patients in Pembrokeshire and Wales who are suffering from rare, chronic, life-limiting, life-threatening, autoimmune illness, so that these patients are presumed to have access, rather than completing an application under the WHSSC.

The Welsh Health Specialist Services Committees (WHSSC) are the representatives who are authorised to refer and commit WHSSC funding for treatment at preferred specialist centres outside Wales.

This exemption to the principle should apply to SLE, SCLE and related conditions such as Sjogren’s syndrome, and myositis etc., (the exact list of related rare autoimmune illnesses to be agreed between the Welsh Assembly Government and the British Society for Rheumatology and patient advocacy groups.

Summary

I am campaigning for access to specialist lupus care for people living with lupus in Pembrokeshire, the lack of which is severely impacting on the management of their serious chronic, often life-limiting and potentially-life shortening illness, their ability to work, their relationships and their general quality of life.

There is currently a “Gate Keeper Principle” in place and the Secretary of State for Health at the Welsh Assembly Government is refusing to remove it for lupus patients in Wales.

This puts us at an immediate disadvantage with our healthcare, treatment and medication plans, as all Centres of Excellence acknowledged by LUPUS UK are in England.

As a result, patients with lupus and other rare autoimmune illnesses (these rarely come alone and patients usually have two or more related illnesses) in Wales are being denied the right to access this expertise which could really benefit them in the long term.

Unfortunately lupus is prone to relapses and remissions and results in considerable morbidity due to flare activity and accumulated damage, with an increased risk of premature death. In fact lupus sufferers have a mean age of death of 53.7 years. Preventative measures would surely be more cost effective, rather than treating the kidney disease, strokes and heart disease etc. that can occur in the long term if the disease is not adequately controlled.

These patients would undoubtedly benefit from receiving specialist care and monitoring, with a view to local rheumatology co-operating with the lupus expert to provide the best care possible and the best outcome for the patient.

Applications for funding in Pembrokeshire, for a referral to these Lupus Experts and Centres are being denied, or doctors are refusing to complete the paperwork and make the applications in the first place, under Hywel Dda University Health Board. Patients are being encouraged not to apply as the application will never be approved.

Hywel Dda University Health Board maintain that the local hospital can adequately diagnose and treat lupus, with the inference being that we do not need to access specialist care.

LUPUS UK and the members of Pembrokeshire Lupus Support Group would strongly disagree with this assessment.

The Health Board are not following the British Society for Rheumatology Guidelines for the management of SLE in Adults, so in our opinion, are not providing an adequate level of care.

This is a very unfair and unjust system for people living with lupus in Pembrokeshire and Wales as a whole.

Lupus patients under NHS England have the right to choose where they are referred to and therefore can access these centres. Why don’t Welsh patients have this right too?

We feel that we are ignored and our illness misunderstood / underestimated every single time.

Please show your support for our cause by signing our petition.

Thank you!

Wendy Diment

Pembrokeshire Lupus Support Group

LUPUS UK

I take this opportunity to point out that the current Lupus UK Centres of Excellence are;

University College London Hospitals (UCLH)Louise Coote Lupus Clinic - Guy's and

St Thomas' Hospitals, London

The Kellgren Centre - Manchester Royal Infirmary

Alder Hey Children's Hospital - Liverpool

The Royal National Hospital for Rheumatic Diseases (RNHRD), Bath

Queen Elizabeth Hospital, Birmingham

Addenbrooke’s Hospital, Cambridge

The hospitals that have a lupus nurse are;

Aberdeen Royal Infirmary

Royal National Hospital for Rheumatic Diseases (RNHRD), Bath

Queen Elizabeth Hospital, Birmingham - very soon!

Royal Bournemouth and Christchurch Hospital

Addenbrookes Hospital, Cambridge

Russells Hall Hospital, Dudley

Western General Hospital, Edinburgh

Glasgow Royal Infirmary

Leicester Royal Infirmary

UCLH

Llandudno Hospital (only provision in Wales)

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Reply

This is what I wrote:

LUpus Patients Understanding & Support (LUPUS) supports this petition. For 18 years, we have provided free information & free online psychological support for people-affected-by-systemic lupus erythematosus, lupus variant conditions & the antiphospholipid antibody (Hughes) Syndrome. Not only is this a poorly understood condition by doctors, patients, particularly women during their child bearing years, are frequently told "it's all in the mind". Diagnosis can be delayed by 20 years or more.

SLE can affect all body organs, from skin to blood, to internal organs like the kidneys, lungs, heart & even the brain, causing a variety of neurological symptoms, including depression, anxiety and even hallucinations. In addition, apart from these disturbing symptoms, patients will suffer at times, depression and anxiety, as part of being a "normal" human being. Not to be affected at times, with depression and/or anxiety, would suggest, said one eminent rheumatologist, that the patient had further brain inflammation! Too often patients are dismissed with a peudo-psychiatric "functional" diagnosis because the doctor either doesn't know, or presumes there exists no actual disease.

Living with a chronic disease, such as lupus, is painful and debilitating. One would expect the NHS and other services, would protect the very patients who are suffering. It is frequently said that while only one person in the family may be suffering with a diagnosis of SLE, it is the entire family, who suffers.

I have reposted on HU & at LUpus Patients Understanding & Support (LUPUS)

lupus-support.org/topic/304...

The more organisations that are involved the better. Perhaps you would consider this for the next petition.

Reply

Hello

Thank you for your support.

The way I went about starting my petition was not supposed to be a slight on other charities, at all.

I, as an individual, have been treated appallingly by my local health board and so started my support group about 15 months ago now, with the help of LUPUS UK. With a view to supporting each other and working together as a group. I also started this campaign and petition.

I haven’t consulted any other charities before launching it and have only asked other charities retrospectively to help support it.

It might not have been the best way to do it, but I am an individual with no prior experience of campaigns or petitions and am just trying my best to improve things for us here in Wales.

Best wishes

Wendy

Reply

It shouldn't be up to individuals - and you are not the only one! I appreciate that you, alone, have had to do this task because of your appalling treatment. I hope this will be successful for you, personally.

Fund raising, grants etc are all good but it's the individual who gets lost. I hope you didn't feel I was criticising you - if that is the case, I apologise. I am, however, critical of organisations who refuse to coordinate with other organisations.

Many years ago, I put a lupus organisation on line. Inn my naivety, I thought there would be a "we" and other organisations would welcome working together. Not so! I became a threat and thus my wish to offer psychological support to people with lupus, was confined to my tiny organisation.

No one should have to accept the kind of treatment you suffered by the very people to whom you turned to for help.

You will always have my personal support and my organisation. Call me anytime if I can be of any help.

I wish you a happy and healthy 2019.

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