PSALV - Psoriasis Scotland Arthritis Link Volunteers

PSORIASIS BRIEFING
12 January 2005

CHAIR: Helen Eadie MSP

SCOTTISH PARLIAMENT

EDINBURGH

Wednesday 12th January 2005

Committee Room 5: 12.30 p.m. - 2.30 p.m.

Programme

12.30-12.35	INTRODUCTION	Helen Eadie, MSP
12.35-13.15	What is psoriasis? How does it affect people? What treatments are there? Psoriasis - medical background Nursing Care of Psoriasis Patients Patient's story Psoriatic Arthritis - medical background Patient's stories	Dr David Burden Karen Stephens Steve Tait Prof Iain McInnes Janice Johnson
13.15-13.30	DISCUSSION
13.30-14.00	How can we improve services for people with psoriasis? Why is access to treatment so difficult? How can health policy make a difference?	Dr W S Douglas Helen Eadie MSP Shona Robison MSP Mary Scanlon MSP David Davidson MSP Fiona Hislop MSP
14.00-14.30	DISCUSSION

David Burden is Consultant Dermatologist at the Western Infirmary in Glasgow and Senior Lecturer in Faculty of Medicine at the University of Glasgow

Psoriasis - medical background

Psoriasis is one of the commonest chronic diseases affecting the population of Scotland. 130,000 individuals are affected and in over 30,000 of these people the disease is particularly severe. It produces red scaly plaques on the skin that are painful, itchy and embarrassing, and up to a quarter of patients also have an associated arthritis. The combined effect on quality of life can be very severe, comparable to that produced by ischaemic heart disease and cancer.

There is no cure, although a substantial proportion of patients can be adequately controlled with topical medications, phototherapy or oral medications. All of these treatments are associated with risks of toxicity and they are time consuming for the patient, dermatology nurses and dermatologists. In the most severe cases, intensive treatment in hospital can be effective, where available. Over the past few years, several new injection/infusion based treatments have proved to be effective in treating severe psoriasis and have been licensed in Europe for use when other treatments have failed. These drugs are expensive and their funding is proving difficult in Scotland.

Karen Stephens is the senior charge nurse for Dermatology Tayside with responsibility for the nurse-led Day Treatment Centre in Perth Royal Infirmary, and the Phototherapy unit and 14 bedded Dermatology ward at Ninewells Hospital Dundee. She is also the Vice Chair of the Scottish Dermatological Nursing Society and Scottish representative on the British Dermatological Nursing Group

Nursing Care of Psoriasis Patients

Dermatology nursing has changed greatly over the past 10 years, however further role development is desperately needed to meet the increasing demand on dermatology services and heightened patient expectation. Due to the chronic nature and variety in severity of Psoriasis expert nursing care is required in both community and hospital settings. Nurse-led services are expanding to provide specialist clinics in medical centres and GP surgeries, outpatient care in Day Treatment Centres and Phototherapy in specialist outpatient departments. These facilities enable patients with this debilitating chronic condition to access care close to home and continue their normal daily activities. Not all Psoriasis sufferers can attend for outpatient care however, patients with severe disease continue to need intensive in-patient care delivered by experienced dermatology nursing staff. A valuable development has been the role of the specialist liaison nurse who provides an essential link between hospital and community, ensuring patients are equipped to manage their disease at home and community staff are fully informed and educated to support these vulnerable patients. They also provide a life-line to patients struggling to cope at home with their psoriasis and who may need both psychological and physical care. Dermatology nurses are working hard around the country establishing new creative and innovative services to meet the needs of psoriasis patients, but more experienced skilled staff are needed. To meet these ever increasing demands requires support, education provision and additional resources.

Steven Tait is aged 35 and married to Janice with two-year old twins Ross & Emma. Steven resides in the small town of Alyth in rural Perthshire.He is currently a technical consultant to British Gypsum, advising on a variety of technical issues on the company's products to the construction industry throughout Scotland. Sporting activities include Hillwalking and Golf of which he has a current handicap of 12 and a set of Clubs!

The Patient Journey

Steven has suffered from Psoriasis for the last 15 years in varying degrees and has been a regular visitor to the Dermatology Out Patient Treatment Center based at Perth Royal Infirmary for the last 8 years.

Last UVB Treatment was in December 04, current areas affected, are literally from Head to Toe.

Prior to treatment at the center I was treated with various topical treatments (steroids creams etc.) by my G.P.

I travel extensively and currently drive upwards of 45k miles per year. I receive full support from the company in my treatment sessions when applicable.

Iain B McInnes is Professor of Experimental Medicine at the University of Glasgow, and Honorary Consultant Rheumatologist at the Centre for Rheumatic Diseases, Glasgow Royal Infirmary He is an internationally recognised researcher and expert on diagnosis and management of Psoriatic Arthritis.

Psoriatic Arthritis - medical background

Psoriatic arthritis is a debilitating condition that is under-recognised and therefore under treated. Combination of skin and joint disease is devastating and synergistic in generating harm to the patient. Novel therapies including Enbrel are potentially life changing but are expensive and require to be monitored carefully. They also should probably be used earlier than currently proposed (from US experience) Newer future treatments may offer even more benefit but will also come at a cost - therefore we need to plan and prepare. Savings in the community and in social costs may have to be offset in terms of Health care spending - an obvious but crucial point as previously cheap specialties become more expensive and aggressive in intervention.'


Janice Johnson is the founder and chair of Psoriasis Scotland Arthritis Link Volunteers PSALV, launched as a charity in January 2004 to raise the profile of psoriasis and psoriatic arthritis, and to offer support and information to those affected.

How are people affected by Psoriasis and Psoriatic Arthritis?

I've had psoriasis for 43 years, and PsA for 30. I know, from my own and many others experience, that public perception, knowledge and attitudes towards psoriasis have not changed very much in my lifetime. The reasons are complex: partly because Psoriasis is still a hidden disease in many ways, as it embarrasses so many sufferers so much they feel they must hide it, as it can affect their careers and personal lives more if they don't, and also because there was no active psoriasis support charity in Scotland. I've been involved with support groups and charity here for 6 years, and would say that one of the major problems is the lack of knowledge in the public, and amongst employers and agencies as to what it is, and how to support people. Unfortunately GPs aren't always as well informed and understanding as they could be. People can have problems obtaining the best treatment and being referred on to a dermatologist or rheumatologist. If you develop PsA, you may not have it properly diagnosed, or get the proper drugs in time to stop deformity and disability, we are so glad to hear that the new "biologicsC now offer hope in this area.

Psoriasis is a strange word, from the Greek, it means itch. Yes it itches, it also bleeds, weeps, is painful, and scales, especially on the scalp. I remember as a young teenager, dreading visits to the hairdresser, because invariably I would be asked what it was! Ive found a tendency to trivialise psoriasis and not realise that even when its just your scalp-it's a major problem, you have to build your life around it - I cant go anywhere unless I know I can treat and wash my scalp every two days. Many people have to spend hours each day for the skin to be be in a reasonable state so they can go to work. Psoriasis is wearing to treat, it's a bit like painting the Forth Bridge - you are never finished. It requires a very strong personality to stand up to jibes and cruel remarks, especially when young, and psoriasis can lead to depression and serious mental illness. Due to PsA, I was unable to dance at my own daughters wedding recently, to wear smart shoes, and feel that I won't be able to help out with future grandchildren. And I know very well that in many cases it's much more than that - inability to work, and care for family.

Now we hope that the SCCS and our own parliament can help to change things - patients should have a voice here.

The following are some quotations and stories from people who have contacted psoriasis support groups including PSALV:

Shame, Stigma, Anger

"I feel a sense of shame when I look at my body and try to hide the condition from friends"

"I believe psoriasis is much more than a skin disorder; it affects how I think, the things I do and takes up a lot of my time"

"Whenever I sat or walked I shed a shower of skin crumbs. I looked and felt a mess."

"I have experienced on several occasions people not giving me my change instead just throwing it down on the counter and in some cases refusing to take money from my hands as they are covered in psoriasis."

"when your confidence has been shattered, you feel so insecure"

"People staring... Then rubbing your collar, saying oh you've got dandruff and when they are told what it really is, they recoil as if you are a leper. That is truly hard."

"I had to leave my college course (Beauty Therapy) as I felt so gross who would want to be treated by me!"

"I feel angry as I have lost so much of my carefree life."

"I don't think that I would have ever gone out again, if it had not been for my boyfriend Kevin, he assured me (as did my folks) that I still was a beautiful person."

"I'm always trying to persuade others that I am not dirty, unwholesome, or infectious"

"Because I suffer from psoriasis, I was put on the scrapheap at 16"

Discrimination, Bullying

"I was classified as an alien throughout my childhood. I was spat on, teased and laughed at. I left school at 14; I simply couldn't take it any more."

"I tried 4 different places prior to my wedding day to get my nails done but was refused at every one due to the psoriasis on my hands."

"I have also been stopped and questioned on numerous occasions when going swimming."

"Constantly battling to be taken seriously by my GP and when I was, my GP wouldn't help me be seen quicker by a Consultant."

"Fighting the DLA and the Benefit systems Still waiting for an outcome (7 months on). They don't seem to recognise the disease and its sufferers.

"PsA sufferers need so much more access to help and support than is currently available - so do carers and partners of these often forgotten folk who just want to get on with living a life and contributing to society!"

Disability, Frustration, Desperation

"I was the commended cadet during army placement I did for work experience from school - but later told not to consider applying to join the forces - not because I couldn't make the grade; but because PSA sufferers can't defend their country - we're a liability apparently! "

"I used to play for Scotland at Netball but unfortunately once the PSA started it not only affected one or two joints it also hit all the large joints that I had injured over the years"

"I can now hardly walk the length of myself and I am in continuous pain just like most other people who suffer from PSA."

Desperate people do desperate things

"Our son spent a total of 3 years as an in-patient between the ages of 12-18 years because of psoriasis/psa." "We saved and took him to the Dead Sea on a therapeutic holiday for his 18th - what a revelation! He could go out wearing a short sleeved shirt on when we got home; usually summer time meant hiding under clothes to avoid being called 'flaky' or people shying away in case they 'caught' whatever that guy had! " "Worse still - when he did try to go away with friends, he attempted to halt a flare up by taking extra medication, and ended up 48 hours away from a potential liver and kidney collapse!"

Dr Stewart Douglas is Consultant Dermatologist to NHS Lanarkshire. He is past-president of the Scottish Dermatological Society

Why is access to treatment for psoriasis so difficult?

Psoriasis is a disease that can be treated very effectively, but requires ready access to specialist expertise and facilities, and for the most severely affected, highly effective, but expensive, biological treatments.

The NHS, however, intends that most people with skin disease should be treated by GPs and makes very limited provision of specialist services for skin disease - about 10-20% of that available in other EU countries.

Skin disease is one of the lowest priorities in secondary care. Consultants, specialist nurses and treatment facilities have not increased in proportion to demand. Some dermatology departments have suffered cuts to fund "higher priority" hospital services.

Reduced training in dermatology for medical students, General Practitioners and Community Nurses over the past 30 years has resulted in a gradual decline in expertise and competence in recognising and treating skin disease in Primary Care. Only 5% of GPs are trained in skin disease and only 1% develop a special interest.

At the same time common skin diseases such as eczema and urticaria have more than doubled in frequency and there has been a massive increase in skin cancer which may not peak for many years.

The consequence of the combined effects of reduced Primary Care expertise and the skin cancer epidemic has been an increase in specialist referrals that has swamped hospital dermatology services. In the absence of increased provision to keep pace with increasing demand, specialist services have had to switch from treatment of chronic disease to dealing with suspected cancer - in effect providing an unplanned and unfunded skin cancer screening programme.

The main impact has been on people with severe chronic inflammatory disease such as psoriasis. Emergencies and urgent problems can still be dealt with effectively but people with chronic disease cannot easily get expert help when they need it.

Waiting times targets are not much help - a wait of 18 weeks for treatment is of little use to someone with a flare-up of psoriasis. The new GP contract has worsened the situation by targeting resources on "chronic" or "long-term" conditions - and away from skin disease. There are very limited budgets for new treatments. Applications for these treatments have to be made through a highly labour-intensive and wasteful mechanism for each individual case. The most recent SMC advice about these new treatments adds a further anomaly - people with psoriasis with arthritis may qualify for one of the new treatments, but those without arthritis do not, irrespective of severity of psoriasis.

Psoriasis is one of the main victims of the rationing of NHS facilities and expertise, manifested by waiting times for specialist opinion, hospital treatment and restricted availability of new, evidence-based therapies Inexpert treatment is extremely wasteful of NHS resources. Investment in improved services would be good value for money and would probably pay for itself in improved cost-effectiveness alone. The current cost of specialist dermatology is less than £2.50 per person per annum, and a modest increase would have a large effect.

Clinics for psoriasis that combine dermatological and rheumatological expertise are highly desirable but require service planning and funding.

Improved treatment for psoriasis would produce gains in physical and mental health and reduced time off work, and be of real benefit to individuals, communities and the Scottish economy.

Action Points

Psoriasis is a prototype chronic disease causing significant physical, mental, and social disability. It probably incurs the highest prescription charges of any chronic disease. The high cost to the individual, family, community, and industry could be reduced significantly by improved treatment. Please support the motion to have psoriasis and other skin disease classified as chronic disease.
Skin disease is not a priority area under the new General Practitioner contract. GPs are abandoning treatment of skin disease to meet targets for other diseases. Targets for common skin diseases like psoriasis must be included in the Quality Outcomes Framework to prevent further neglect.
Inexpert treatment is extremely wasteful of NHS resources. Investment in improved services would be good value for money and could pay for itself in improved cost-effectiveness alone. The current cost of specialist dermatology is less than £2.50 per person per annum, and a modest increase would have a large effect.
The recently-announced initiative from NHS Education Scotland, to establish a training course in skin disease for nurses is welcome. We need similar initiatives for pharmacists, medical students and doctors.
Although 20% of GP consultations include skin disease, medical schools have no plans to increase teaching of dermatology. Only 5% of GPs receive training in basic dermatological skills, but "Modernising Medical Careers" has no plans to increase posts in dermatology for GP trainees. There must be restoration of training for medical students and GPs as outlined in the report of the All-Party Parliamentary Group on the Skin.
The Skin Action Scotland redesign programme is a welcome step towards modernisation and improved services. Redesign reduces bottlenecks, but does not tackle the underlying deficit in service capacity. Funding is limited and there is no guarantee of continuing support by NHS boards after the 2-year pilot phase. This initiative should be the first part of an ongoing programme of investment and improvement.
The new biological treatments for psoriasis and arthritis are expensive and are severely rationed, despite good evidence that they are effective. The process for obtaining approval for their prescription consumes (wastes?) considerable NHS medical and management time. The SMC ought to include experts in skin disease on the committees which make decisions about new dermatological treatments.

PSORIASIS - Background information

Psoriasis is a stigmatising and potentially disabling skin disease affecting 130,000 people in Scotland.

It is sometimes trivial, occasionally fatal, but frequently causes physical, social and psychological disability. It affects people of all ages. Psoriasis is disruptive of normal family life, and an important (and expensive) cause of lost working and educational time. It is frequently, wrongly perceived by other people as infectious or contagious. It is due to an inherited defect of immunity that causes excessive growth and failure to mature of the skin. Its main manifestation is red scaly patches ranging in severity from a few small plaques on places like elbows, knees or scalp to total body cover. It can be unbearably, constantly, itchy. About 1 in 4 of those affected have arthritis which can also range from mild to highly disabling.

Untreated, people with psoriasis and psoriatic arthritis can suffer a uniquely distressing combination of symptoms - constant itch and flaking and chronic pain. Some people cope by joking about it: "With psoriasis you always have a White Christmas..." But depressive illness is frequent and there is increased risk of suicide.

Psoriasis is one of the most difficult of chronic diseases to live with.
A middle-aged man with severe diabetes and moderately severe psoriasis recently commented: "I can live easily with my diabetes, I just take medicine regularly and stick to my diet. My psoriasis is hell to live with, it is unpredictable and regularly ruins my hopes and plans, and wrecks holidays and leisure. You feel so insecure in your dealings with other people. You are seen as dirty or untouchable".

Increasingly people with psoriasis report discrimination against them.
A particularly worrying trend noted by the support organisations, is increasing rejection of applicants for nursing courses on the grounds of having psoriasis. We are not aware of similar discrimination against applicants for medical school.

Psoriasis is not currently curable but is eminently treatable.
Treatment for all but the mildest psoriasis is complex and requires specialist facilities such as phototherapy and outpatient treatment centres staffed by specially skilled staff Many people with psoriasis need multiple prescriptions to treat different parts of the skin, and additional treatments for scalp, skin folds, bathing, and joint disease. New treatment options include highly effective immunological treatments that can help people to have less severe disease and live satisfying and fulfilled lives. Psoriasis is lifelong and should be classified as a chronic or long-term condition. People with e.g. thyroid disease and diabetes, which cause less disability, have priority services and free prescriptions.

The following is an extract taken (verbatim) from a website recently established by a talented teenager (though he would not win a spelling competition) where he describes his experience of developing psoriasis:http://www.scratchyteens.co.uk

Well my name is Rik and I've had bad psoriasis since Feb 2003

It all began this Febuary after my fiance left me i was very low, i was drinking alot and working 3 jobs, i started noticing red flakey patches appearing on my arm, after there were about 30 i went to the doctors who told me i had Guttate Psoriasis, but did not really prepare me, as it has changed my life.

Over the following 3 months they tried me on 3 new creams, each one harder to put on, the pain was unbearable, suicide was high on my "to do" list, but thinkin of the people id hurt u (know who u are mum dad, jenny john bob and Chris) saved my life, i owe it all to them, no matter how drunk or how much pain i was in they came first.

Im Mid may i was signed off work, was in a great deal of pain, was drinkin to let me sleep and taking painkillerss too. i had a dermatology appointment, he told me my P was unstable and i had a bacterial skin infection called Erathema multiforme ( spelt wrong i know) this was reacting badly to my cream which at this time was Devonex.

Two days later i was addmitted to Aberdeen Royal Infermary Dermatology ward, where the treated me very well, they used coal tar treatments, and kept me moisturised all day, after ten days there they let me out, to begin UVB treatment 3 times a week.

After about 9 sessions i was really niticing a difference and despite the hospital and having to put on evorex and diprobase twice a day i managed to get back to work, well for 2 days anyway, on the tuesday night i had a bad car crash, snapped my thigh and was in hospital for a week, my psoriasis went mad, as i had to miss a month of UVB, but now 6 weeks after the crash both the thigh and the P are coming on fine.

I know how lonely you can feel with P, u feel ugly and dont want anyone to see you, but as i very quickly found out its nearly all in your head, the more folk see P the less they are affraid of it. Many a night i sat in my flat drunk out my mind crying wondering why i had this, but there is no reason so u just cope with it. But remember no matter how bad it gets there is always someone going through the same, ur never alone. The more you know about P the less you fear people asking you wat youv got, ARM YOURSELF WITH KNOWLEDGE.