Raynauds Hot News Vol4

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30th Anniversary Edition

Issue No. 122

Cool Million Appeal Reaches £850,000

In this issue...

Thanks to everyone who has supported the Cool Million Appeal. We are now in a position to be able to support even more research into Raynaud’s and scleroderma. It is only through your contributions that we are able to fund projects which otherwise would not be possible. We have a way to go to complete the Million but there is still time and all contributions are very welcome.

Raynaud’s Awareness Month February 2013 This is a very significant date in our calendar when we aim to reach many thousands of people who may or may not be aware that they have Raynaud’s or may not have heard about the RSA and the support and advice which is available to them. Not only do we aim to contact sufferers but also to educate the general public and make them aware of the implications and problems experienced by people with Raynaud’s. Any help which you can give in the way of publicity would be very much appreciated. Please let us know if could help by putting up posters, handing out leaflets, providing a case study or be prepared to talk to the media. Quite often when we contact members to ask if they will help in this way and they are very willing but unless we know in advance we are not aware of the help which you, our members can provide.

What’s in a Name?

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When one revisits medical history, it isn’t possible to ignore the French doctor who discovered Raynaud’s Disease - the disease that can and will affect the blood flow to extremities.

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Dr Maurice Raynaud

Raynaud’s Disease was named after Dr Maurice Raynaud, who was born in 1834. His father was a university professor. With the help of his uncle, who was a very well known doctor in Paris, Dr Raynaud was able to gain his medical degree in 1862.

Liz Wragg Nurse Specialist Page 6

Dr Michael Hughes Digital Ulcers Page 8

Dr Mark Harber Scleroderma Renal Crisis Page 9

Continued on page 3

Annual Conference It was certainly a conference to remember. Excellent speakers, whose reports will appear in future issues of Hot News, the getting together of many old friends and new, celebrating and rekindling friendships and making new ones. We are most appreciative for the time given by the speakers, chairpersons etc. to make this such a special occasion.

Special thanks to Professor Dame Carol Black who opened the conference and was also our after dinner speaker on the Friday evening, where we were joined by guests David Briggs, Lord Lieutenant of Cheshire and his wife Michelle, Roger Jefcoate and Veronica, Lady Piercy. See page 7 for further information and photos.

Celebrating 30 years 1982 - 2012

Prof Graham Hughes Connective Tissue Diseases Page 10

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Welcome Dear Readers, The Cool Million continues to grow but we still need a real effort in order to be able to reach our target. Thank you all so much for the support which you have given to this appeal. It is very much apprecoiated.

Anne H Mawdsley MBE

To the Future When I started the Raynaud’s Association 30 years ago I simply had Raynaud’s. Little did I know where my journey would lead both me and the charity.

I am not going to go back over the past but rather focus on the future for the RSA. Members are the core of our organisation and I have made many friends over the years I would like to thank all of you for your support.

When I started out on this mission, a charity was set up in a simple way to help people and raise funds for research. Times have changed and there are many regulations we must conform to. I feel that this is now taking up much of my time which I would prefer to put to better use and therefore I want to get back to where I was 30 years ago, speaking to people on the phone, helping with welfare issues and let someone else deal with the day to day issues which arise in running the charity.

It is for this reason and because I feel the RSA needs someone younger with new ideas, who can take the charity forward, that I am standing down as CEO at the end of the year and taking on a different role - that of the welfare of patients. I know that the trustees will keep an

eye on what is happening and I have confidence that I can leave it safely in their hands together with that of the new CEO, Elect, Liz Bevins, who will be taking over from me. Liz is very enthusiastic about her new role and there will be more from her in the next issue of Hot News.

Our trustees, have been invaluable and here I must mention Jo Kaddish who was a long-standing member before becoming a trustee and in 1994 when she took on the role of Chair of the Trustees. Who else would have accepted the challenge to join me to take a team of huskies across Finland at minus 32 degrees when she My thanks to everyone for also has Raynaud’s?! enriching my life over the past 30 years. My passion for Sincere thanks to all the supporting patients, creating health professionals who awareness and raising funds have supported our work and for research is still as strong who we have been able to as ever, so I am not leaving fund in order to progress with the RSA. I will still be around research and clinical care. So for as long as I can, to speak much has been gained over with you on the phone or the past 30 years with keep in touch by email, letters the RSA providing a total etc. It is not the end but a new of twelve million pounds beginning and I am sure that towards research and welfare you will all continue to give projects, in addition to the the RSA your full support. funding of nurse specialists.

Thanks to my staff for their support and contribution over the years, especially Karen who joined us 18 years ago and who runs the membership database and online shop so efficiently.

I would like to say a special thank you to Professor Chris Denton who has been a lifeline to the RSA, with daily emails, a regular Doc Spot in Hot News and is always on hand when needed. I am delighted that he has recently To our President, Professor been invited and accepted Dame Carol Black, our the role of Vice President.

Patrons - Veronica, Lady Piercy, who has been a loyal Finally I send everyone patron since the beginning the warmest of wishes and Roger Jefcoate, who has for the festive season been a constant source of support. Patrons Nick Ross, and for the future. and David Wilkie also sent their best wishes for our 30th Anniversary.

Anne

Best wishes for Christmas and the New Year from

All of the team at the RSA 02

Chief Executive Anne H Mawdsley MBE

Co

President Prof. Dame Carol Black DBE Vice President Prof. Chris Denton Trustees Barry Hicks Joanna Kaddish Beverley Myers Professor Jeremy Pearson Professor David Scott Patrons Sharron Davies MBE Roger Jefcoate CBE Veronica, Lady Piercy Nick Ross David Wilkie MBE Medical Advisors Dr. M Anderson Prof. J Belch Sister S Brown Prof. C Denton Prof. A L Herrick Dr. C Lovell Dr. R Macdonald Prof. P Maddison Prof. R Moots Prof. D Scott Prof. A Silman Dr. D Veale

Head Office: 112 Crewe Road, Alsager Cheshire ST7 2JA Telephone: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Websites: www.raynauds.org.uk www.scleroderma.org.uk Charity Reg. No. 326306

Disclaimer: The Association does not accept responsibility for the information contained in the newsletter, either medical or the advertised products.

Remember what suits one person does not necessarily suit another. If in doubt consult your doctor before trying any suggested remedies.

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What’s in a Name?

Continued from front page

Raynaud’s

Maurice Raynaud

Claude Bernard

In the late 1850s, a 27 year old female, presented with the fingers of both her hands suddenly becoming pale and cold. Over the next few weeks the tips of some of her fingers shrivelled up and turned black, causing her great pain and discomfort. The doctor who attended her was an equally young man called Maurice Raynaud. He was perplexed, for he was faced with a patient who had spontaneously developed gangrene of her fingers with no apparent cause. She seemed healthy, there was a good pulse in her wrists indicating a good blood supply to her hands, yet her fingers looked starved of blood and the tips of her fingers were gangrenous.

His medical teaching told him that gangrene was due to either blockage of a main artery in a limb, diabetes, typhoid, or poisoning by a fungus called ergot which grows on mouldy rye.

Clearly his patient did not fit into any of these categories, but she did have a curious history of her fingers turning odd colours whenever she was cold or under stress.

He decided that the colour changes must have been due to some sort of intermittent blockage of the blood supply and that the spontaneous gangrene of her fingertips was in some way connected.

Over the next few years Raynaud saw similar patients and discussed the problem with colleagues who had also come across the condition. Before long he had collected the case histories of some 25 patients whose fingers, toes, or sometimes the face and ears changed colour in the cold. Some of the patients had also developed areas of gangrene on the affected parts. He was however, still unsure as to the cause of the problem. Raynaud’s Disease goes through various stages which is

something that Dr. Raynaud tried to describe. This included three colour changes as well as the appearance of flat nails.

At around the same time, another French doctor, Claude Bernard discovered that arteries, those vessels which carry bright red fresh blood all around the body, are supplied by nerves which make them constrict, that is, when the nerves were activated the arteries would decrease in calibre and carry less blood.

The nerves in question were called the sympathetic nerves. Here at last was Raynaud's answer!

The sympathetic nerves must be overactive, he thought, making the arteries so narrow that not enough blood can get through to the extremities to keep them alive. When the condition is severe enough gangrene develops but in its milder form the affected areas intermittently turn white or blue and finally red when the blood eventually returns. In essence, the fingers and anywhere else affected, were being strangled or asphyxiated due to lack of blood! He published his thoughts in the form of a thesis in 1862 called, "De l'asphyxie locale et de la gangrène symétrique des extrémités" translated as "On Local Asphyxia and Symmetrical Gangrene of the Extremities".

Inevitably, the condition came to be known as Raynaud's Disease. (now called Raynaud's phenomenon or simply Raynaud's).

While he would never go on to secure a medical position in any of the hospitals of Paris, his discovery of Raynaud’s Disease perhaps made up for it. The disease which is one that is known to affect the ears, nose, and extremities, was something that Raynaud tried to explain when he discovered it in 1862.

The disease is thought to be hereditary and at the time that Raynaud discovered the disease that would later carry his name, there was very little to go on as far as prevention or treatment. The one recommendation that seemed to continue into the future was that patients should try to stay warm and avoid

consuming anything that would constrict blood vessels.

Maurice Raynaud died in 1881 having suffered for several years from organic heart disease. He was forty-seven years of age at the time of his death. Raynaud was a man of great integrity, of spotless character, and recognised for unusual intellectual attainments. He was at the same time a physician, a savant, a philosopher and a man of letters.

Scleroderma Investigation reveals that scleroderma has been around for a long time. Cases of skin disease similar to scleroderma may be found in the writings of Hippocrates as far back as 460–370 B.C. Oribasius (325–403 A.D.) and Paulus Agineta (625–690 A.D.), also wrote on the subject. It is difficult for us to know if these were truly examples of scleroderma because the descriptions were inexact.

This illustration was taken from the International Scleroderma Network (ISN) USA website sclero.org The first definite description of the disease was by Carlo Curzio in a monograph published in Naples in 1753.

This account produced considerable interest in French and English medical circles. The account concerns a young woman of 17 named Patrizia Galiera, who was admitted to the hospital and assigned to Dr. Curzio. Her symptoms as described by the doctor involved hardness of the skin (differing in degree from place to place), tightness around the mouth, and hardness around the neck. He noted loss of warmth in the skin but no other problem in pulse, respiration, or digestion.

Much of the report contains details of the treatment, which included warm milk and vapor baths, bleeding from the foot, and small doses of quicksilver. After 11 months, the skin became soft and flexible, and all natural functions were restored.

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Doc Spot Your Questions Answered Professor Chris Denton

FRCP

Consultant Rheumatologist, Royal Free London, NHS Foundation Trust

My doctor has diagnosed me with Raynaud's. Is it advisable to ask to be referred to a rheumatologist? it is sensible to be reviewed by a rheumatologist, who can organise blood tests (especially antinuclear antibody tests) and sometimes blood vessel tests, such as capillaroscopy (looking at blood vessels around the base of the finger nail). If these tests are normal then primary Raynaud's is the most likely diagnosis and a drug called nifedipine may be very helpful. If not there are other treatments available and you can discuss these with your doctor.

I have had Raynaud's for many years, but this year I have had to start on B12 injections following a blood test. Then after a colonoscopy I was told I have collagenous colitis. Can they all be connected? I'm worried I might have scleroderma.

Collagenous colitis is a specific medical condition in which inflammation in the lining of the bowel leads to bands of scar tissue (collagen) forming just below the surface of the lining cells of the large bowel (colon). It can occur on its own or associated with other inflammatory diseases and usually causes diarrhoea and poor nutrition. Very occasionally collagenous colitis has been reported in association with scleroderma but this is rare. Although it might just be a coincidence, Raynaud’s could indicate a more general disease, not just scleroderma, and so it would be worthwhile checking that routine blood tests (including antinuclear antibodies (ANA) have been performed and to discuss these with your doctor in case more tests are needed.

I have Raynaud's and my hair is falling out. Can Raynaud's affect the hair? Do other patients often complain of thinning or hair loss?

Hair growth depends upon a very good blood supply to the underlying skin and so hair over the extremities may thin in severe

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cases of vascular disease. This is more common for permanent vascular problems than Raynaud's phenomenon which is intermittent. However some medical conditions that associate with secondary Raynaud's phenomenon such as SLE (lupus) are associated with thinning of the hair and so if hair loss occurs in association with Raynaud's, a series of blood tests may be requested by your doctor.

Is there any involvement of hearing issues that have been raised or recognised, relating to Raynaud's or scleroderma?

Hearing is not usually affected by Raynaud's or scleroderma but occasionally some of the underlying diseases that associate with Raynaud's could be linked with hearing difficulties. An example would be the effect of connective tissue diseases on nerve or blood vessel function in the ear. SLE for example can cause autoimmune damage to the inner ear. A more frequent problem in secondary Raynaud's in scleroderma is the development of painful hard skin or small ulcers on the edges of the ear. These are analogous to digital ulcers as Raynaud's can affect any extremity. They are very sore and may be treated by topical ointments or creams. Though painful and involving the outer ear, hearing is not affected by this common but under-appreciated manifestation of scleroderma.

Is there any connection Raynaud's phenomenon and headaches? I suffer from both been told I cannot take some for migraine prevention.

between migraine and have treatment

There are clear similarities between a Raynauds attack and an episode of migraine headache because both processes result from constriction and dilation of blood vessels. In Raynaud's phenomenon this affects the extremities and is triggered by cold or emotional

stress. In migraine the blood vessels in and around the brain are involved, triggering factors are more varied and the main symptoms often occur when blood vessels dilate after an initial spasm. This similarity in mechanism means that Raynaud's phenomenon and migraine often occur in the same individuals. Unfortunately treatment for Raynaud's can worsen migraine and vice versa. In particular beta blockers that might otherwise be used to prevent migraine are generally avoided in those with Raynaud's phenomenon as the blood vessel spasm in the hands and feet can be made much worse.

I have heard that Raynaud’s can be linked to miscarriages in women of child bearing age. I am 34 and my husband and I are planning to start a family soon.

I wondered if it is true that there is a link - and if so, what can I do to minimise risk?

Raynaud’s is not directly linked to miscarriages, although it is of course much more common in women. The most common form, primary Raynaud’s phenomenon is not associated with risks in pregnancy and often improves when you are pregnant. Some associated conditions such as SLE or anti-phospholipid syndrome can cause increase risk of miscarriage. If these conditions are found then treatments such as aspirin or heparin can be used to reduce the risk of poor blood flow in the placenta that might lead to miscarriage. However, this is something that needs to be discussed with your doctor or midwife. Blood tests can be done to look for these specific medical problems, but fortunately they are not common.

Are ulcers a result of Raynaud's, scleroderma or both? Am I destined to get them from Raynaud's?

Ulceration, or breakdown of the skin over the fingertips or over the knuckles, is a complication of scleroderma and some other forms of connective tissue disease such as vasculitis but does not usually occur in cases of Raynaud’s in isolation, called primary Raynaud’s. This is probably because the blood supply between attacks in primary Raynaud’s recovers enough to keep the skin healthy.

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Doc Spot I first developed Raynaud's about a year ago, and it affected all my fingers. In recent weeks it has changed and is affecting only the tip of the index finger on my left hand. Is it normal for only one finger to be affected?

The severity and extent of Raynaud’s attacks and the resulting colour changes can vary depending upon the temperature, emotional stress, medication and other factors including whether there is an associated medical condition such as scleroderma. It is common for only one finger to be affected in some patients with Raynaud’s, especially in the early stages, although more often other fingers later become involved and so if the condition has improved spontaneously this is encouraging.

Is there any correlation between Anti Nuclear Antibody (ANA) levels and the progress or severity of the disease?

Several studies have been performed to explore this and although the levels of ANA and other antibodies do change in scleroderma, there is no clear association between the level of antibody and progress or severity of the disease. However, specific scleroderma ANA patterns are important as they may be associated with high or low risk of particular complications such as kidney disease in scleroderma.

Over a lengthy period of time, I have been diagnosed with mixed connective tissue disease, morphoea, scleroderma, Raynaud's phenomenon, fibromyalgia and osteoarthritis, and was recently told that my latest flare-up might be polymyalgia rheumatica! My GP told me it is 'normal' to keep being diagnosed with more and more auto-immune diseases/rheumatology issues. Is this correct?

Around 1 in 5 of the patients that we see in our centre who have scleroderma also have features of other rheumatic diseases such as arthritis, lupus or muscle inflammation and so the concept of overlap scleroderma or “mixed connective tissue disease” is very valid. It may partly reflect common factors causing more than one related disorder. However, other conditions such as osteoarthritis are very common and may occur by chance.

Is it possible that morphoea scleroderma

can develop into scleroderma which can affect organs?

Regarding evolution of morphoea, a form of localised scleroderma developing into systemic sclerosis, this does not seem to occur, although sometimes the two conditions may co-exist, again perhaps due to shared causes. This is an area for research that may shed light on both conditions.

I was diagnosed with Raynaud's last year after my hands started to ulcerate. My hospital visit to see the rhuematologist lasted all of two minutes and I never received a follow-up appointment. How would I know if I have scleroderma?

Diagnosis of scleroderma requires expert assessment including examination of the skin, blood tests and sometimes additional investigations. Almost all patients with scleroderma have Raynaud’s but there are also many other causes of Raynaud’s phenomenon and so you should clarify what tests have been done and seek a further expert opinion from a rheumatologist or other specialist if your GP is concerned.

I have recently been diagnosed with scleroderma and have had very itchy skin. Is this likely to improve or will it always itch like this? Is there anything you can recommend to help me?

Itching of the skin can occur for a number of reasons in scleroderma. It is particularly common in the early active stages of the diffuse subset of scleroderma and can be very problematic. Anti-histamines and other treatments may help and tests for other medical causes of itching should be performed (e.g. iron levels and thyroid function tests). In general itching improves as the skin disease stabilises but this can take some time. Itching is less common in the later stages.

Is the heart involved in scleroderma?

Scleroderma, or systemic sclerosis, can affect most of the internal organs and the heart is no exception. A small number of patients have severe heart involvement that affects heart function or blood pressure or can lead to chest pain, fainting, blackouts or breathlessness. It is important to have regular tests including ECG and echocardiogram if heart problems are suspected.

Has there been any evidence to suggest that alternative or complementary therapies work?

There are very many complementary approaches and so it is difficult to make a general statement about their usefulness.

Some patients with scleroderma try complementary treatments. Sometimes they report benefit but unfortunately there have not been robust clinical trials to confirm or assess the degree of effectiveness. My personal recommendation is that any complementary treatments should be supervised by a reputable practitioner and I suggest that such approaches should be additional to conventional medical therapy.

I had renal failure 3 years ago but was given a plasma exchange instead of dialysis. Why was this?

Plasma exchange is a specific treatment that removes some of the proteins from the blood that can aggravate kidney disease. It is used most often in autoimmune kidney diseases but sometimes it is helpful in scleroderma, especially if there is overlap with other processes. Dialysis is only used when the kidneys cannot provide essential functions to regulate salt and water balance or get rid of waste products and only about half of cases of severe kidney involvement (renal crisis) in scleroderma require dialysis.

I have read about digital ulcers and wondered if it is possible to get ulcers on your arms?

Ulcers can occur in scleroderma at many sites although the tips of the fingers or over the knuckle joints are the most common sites. In cases of diffuse scleroderma involving the arms there can be ulceration and this reflects the abnormal skin thickness and poor blood supply in scleroderma.

I have scleroderma with reflux. What really bothers me is waking in the night and coughing. Is there any solution for the cough?

The most important treatment for cough is to try and minimise the effect of reflux into the oesophagus from the stomach. Acid reflux is almost universal in scleroderma and can irritate the voice box, throat and lungs to cause a cough. It especially occurs lying down at night. There are concerns that it may eventually aggravate lung fibrosis or scarring. So treatment should include medication for heartburn such as lansoprazole or similar drugs. Sometimes other medication is also needed and you should discuss this with your doctor.

If you have a question you would like Professor Chris Denton to answer, please send to Head Office 05

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Nursing News Raynaud’s and Scleroderma Specialist Nurse Clinical 1) I continue to run a Nurse-led Raynaud’s clinic every other week on a Friday seeing patients with Raynaud’s for education and Liz Wragg advice. At these clinics I also see follow up patients with digital ulcers including those who have been started on bosentan for their digital ulcers. Within this clinic I see patients from the other Rheumatology Consultants.

2) I am available at the outpatient clinics for advice and I spend time with each new patient at the clinic once they have seen Professor Herrick, to provide them with information and advice on Raynaud's and Scleroderma. Within these clinics I am also reviewing patients with regard to their activities of daily living and referring them to members of the Multidisciplinary (MDT) Team as required. I score the Scleroderma Health Assessment Questionnaires (SHAQ) and Scleroderma Functional Questionnaires, completed by patients at their annual review appointments: high scores highlight those patients with significant functional limitation.

3) Our patient education days continue to be a success and we will be running another programme in May/June 2013 4) We continue to have Medical Investigations Unit admission for new patients to enable them to be admitted for a short period of time in which they can have investigations that are required following review by Professor Herrick. Also in this time the members of the MDT team see the patients so they get early access to the services available. This process is also used for other patients who we feel would benefit from a review by the MDT team. I assist in co-ordinating this process.

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We now have access to a one stop MDT clinic if patients do not want to be admitted, but still want to see the MDT team.

5) Since assisting in the digital ulcer study and reviewing patients with digital ulcers at my clinics, I am starting a Tissue Viability Module in September 2012 to enhance my knowledge of current wound care to enable me to provide enhanced clinical skills to patients within wound care.

6) We introduced our Patient Information Leaflet on the Scleroderma Service in Salford Royal Foundation Trust and patients have found it useful.

7) The advice line continues and the number of calls grows monthly. The diversity of calls varies greatly. These come from other association members, patients attending Salford and other medical professionals. All Salford Royal NHS Foundation Trust advice line calls and patient contacts are documented on the electronic patient record.

Administration

nurses in rheumatology about an education programme within the department to improve awareness of each other’s area of specialties and about the possibility of running a programme across the trust to improve wider awareness, is still in the discussion process due to restructuring throughout the Rheumatology Department at Salford Royal NHS Foundation Trust.

Liz Wragg, Salford Royal NHS Foundation Trust

NURSE ADVICE LINES Sally Reddecliffe & Adele Gallimore Royal Free 020 7472 6354 (For Pulmonary Hypertension Enquiries)

Specialist Nurses Royal Free 020 Sue Brown Bath

01225 428 823

Liz Wragg Manchester

0161 206 0192

Specialist Nurse Leeds 0113

All the administration roles are as before.

After patients are seen in clinic I enter the relevant data from the clinic visit including the SHAQ onto the hospital computer system so it is easily available for review and comparison at the next clinic visit. I can also then see if patient’s scores on the SHAQ are higher and I didn’t see them in clinic, I contact them to discuss if they feel they need further review by the MDT team.

Jan Lamb Liverpool

Research/Personal Development

Lucy Pigram Brompton

I assist in current research projects and co-ordinating clinic visits for ESOS (European Study of Scleroderma) patients and collect data for DUO registry at clinic visits. I am commencing a Tissue Viability Module in September 2012.

The patient education programme is growing and proving to be successful.

Discussion with the other specialist

7830 2326

3923 035

0151 529 3034

Karen Walker Newcastle upon Tyne

0191 223 1503

Audrey Hamilton Belfast 02890

561 310

Paula White & Julie Ingall Portsmouth 02392 286 Jayne McDermott Sheffield 0114

935

2711 627

077588 943 175

(For Lung Enquiries)

Steve McSwiggan Dundee 01382

383 233

(Available Mon, Tues & Wed mornings) The nurse advice lines are not a replacement for care by your GP but very often it helps to talk to a nurse who can listen and offer advice. The nurses who run the advice lines also have very busy schedules and therefore on occasions you will get an answerphone to leave your details for the nurse to get back to you.

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Conference A Very Special Conference This years’ conference, celebrating 30 years, brought together over 100 members, their friends and relatives to celebrate friendship and support for each other. We were delighted to be joined by many health professionals and expert speakers who presented some of their research work over this period of time and which included new and exciting projects for the future. Future issues of Hot News will include articles from the speakers. Below are some of the conference photographs.

A Tribute to Anne

Quilters Shirley Lynch and Iris McMillan, made a beautiful quilt illustrating all of Anne’s challenges.

This had taken a year to complete and even included the pedalo challenge. Anne was overwhelmed by this wonderful piece of artwork and congratulated the two members who had worked so hard to complete this masterpiece. It now has pride of place on the wall in the office.

Trustee Beverley Myers, organised a DVD tribute to Anne, which was played at the end of conference. The DVD production was presented by RSA Patron Nick Ross and tributes were paid by members, trustees and health professionals, who expressed their thanks to Anne for founding the RSA in 1982 and for her enthusiasm and drive over the past 30 years.

Anne would like to say a huge thank you to Beverley, for her efforts in bringing this complete surprise together, to Nick Ross for his contribution and to Danny Lacey who was responsible for the filming sessions at the Royal Free Hospital and the Manor House Hotel, Alsager.

Copies of this 42 minute DVD are available free of charge to all who contributed and on request, to any members who would be interested in receiving a copy. Please send a cheque payable to RSA for £1.50 to cover the cost of p & p.

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Salford Study Digital Ulcers - what are they and what can be done?

“What is a digital ulcer?” might seem on first glance a simple question, but in practice there is wide variation between what patients and their clinicians deem to be the case. This is such an important distinction to make so that patients can be informed as to the right treatment at the right time.

Digital ulcers are ulcerations or breaks in the skin, Dr Michael Hughes that commonly occur in scleroderma. They may occur in up to half of patients with scleroderma. These tend to develop over the fingertips and the small joints of the hands.

As many readers may know, digital ulcers can be more than just a cosmetic problem. They may be very painful and need strong painkillers, and they can also become infected and need treatment with antibiotics.

A lot of work has been done looking at the ways in which digital ulcers form. Our current understanding is that this is ‘multi-factorial’ in nature. In other words, there is likely to me more than one single cause. There may well be a different balance of these causes in the different locations of digital ulcers. Digital ulcers that form at the ends of the fingers and/or toes are believed to be due to mainly problems with the blood supply, whereas, digital ulcers that develop over bony prominences e.g. knuckles and elbows may be more related to the thickening and tension of the skin at these areas.

There is a wide range of different therapies available for digital ulcers. These include simple, common sense

measures like avoiding damage or breaks to the surface of the skin. The avoidance of smoking cannot be emphasised enough as it causes the blood vessels to contract, and reduces the blood supply to the skin and tissues. Antibiotics are often needed as many ulcers become infected. As mentioned above, digital ulcers may be very painful. Various drug treatments are available to increase the blood flow to the skin to help the ulcer to heal. In certain patients, this may need to be given via a drip (intravenously) e.g. an iloprost infusion. An operation is sometimes needed, especially if the infection has gone down to the bone from the ulcer (osteomyelitis) or the deeper tissue has died (gangrene).

The interest and amount of research that is going on around the world into digital ulcers is really encouraging.

A key point is that if you are concerned about a digital ulcer for any reason, including if it might be infected then you should get it checked out by a medical professional.

The RSA produces a very helpful and detailed leaflet on digital ulcers that is a great source of information.

Conclusion Our understanding of how digital ulcers form has come along great strides in the past few years. There is now a wide range of effective treatments available. Any suspicion of infection of a digital ulcer requires prompt assessment by a health care professional. As digital ulcers are common in scleroderma, further research is needed into new ways of looking at ulcers and also new types of treatments.

Dr Michael Hughes Specialist Registrar in Rheumatology Salford Royal NHS Trust

Invitation to Participate in a Research Study At the University of Glamorgan, we are currently undertaking research with the aim of developing smart clothing which will retain heat for longer. As part of this project, we will be performing a study to help us better understand the vascular shutdown associated with Raynaud’s and scleroderma and how to improve objective assessment of its severity, following a mild temperature change. We are approaching members of the RSA to ask you to consider being a volunteer in this study.

We would like to assure you at this point that you are not under any obligation to volunteer, and even if you do, you would be free to withdraw at any time. Participants will be recruited until February 2013, with testing starting in March 2013. The study will require you to visit us at the address below, from March 1st onwards, and then you would be expected to be able to return

08

for a repeat testing 6 months, and 1 year later (September 2013 and March 2014).

The research will take place at the infrared thermography laboratory, at the Clinical Technologies Diagnostic Research Unit (CT-DRU), Innovation House, University of Glamorgan, CF37 1DL South Wales. We intend to cover reasonable travel costs for volunteers, and would therefore would be looking for recruits within easy travel of Pontypridd in the South Wales valleys to include Cardiff.

If you are interested in taking part in the study and/or would like more information, please register your interest either via email at dclegg@glam.ac.uk or call 01443 483555.

Prof Peter McCarthy and Danny Clegg

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55848 RSA Vol 4_Vol1-09.qxd 27/11/2012 15:25 Page 10

Medical News Scleroderma Renal Crisis (SRC)

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Scleroderma Renal Crisis (SRC) is an uncommon but serious complication of a rare disease. Fortunately a good deal has already been learned about SRC and the well defined nature of this complication is permitting us to research into the possible causes and potential treatments.

The diagnosis of SRC is made in the context of a patient with known scleroderma, with some characteristic clinical findings including:

Without effective treatment it is not difficult to imagine why this complication of scleroderma used to have such a poor prognosis with <20% one year survival. Fortunately, however the introduction of better monitoring and a group of drugs know as Angiotensin converting enzyme inhibitors (ACEi), has transformed the outcome for patients with SRC and recurrence of SRC seems very rare while patients continue to take these drugs.

• New onset hypertension (150/85) on more than one reading • A decline in renal function • Evidence of red blood cell destruction in the small vessels* • Retinal changes of severe hypertension (see figure 1) • New onset of blood in urine (without other causes) • Pulmonary oedema (rapid onset of fluid on the lung) • Renal biopsy demonstrating the classical findings of SRC # Not all of these features need to be present for the diagnosis and SRC occurs as the presenting feature in 20% of patients not previously known to have scleroderma.

When patients with scleroderma do develop hypertension it is important for them to be monitored closely and, if severe they should be admitted. Short acting anti-hypertensive drugs are used and gently increased on a daily basis, often with intravenous prostacyclin aiming for a gentle, (not sudden) reduction in blood pressure.

Any patient with severely high blood pressure can develop these changes but in general SRC is more likely to affect those with rapidly progressive and severe scleroderma. Overall, about 12% of patients with scleroderma develop SRC but this number shrinks to only 2% in those with limited scleroderma.

If a patient has not developed SRC in the first 4 years of their disease then they are very unlikely to get it subsequently.

Other predictors include the use of oral steroids, non-steroidal anti-inflammatory drugs, cocaine and other drugs such as cyclosporine. Research done at the Royal Free has demonstrated an auto-antibody, Anti-RNA polymerase, which if present in a patient’s blood is an important risk factor for developing SRC although the mechanism is not yet understood. Conversely the absence of Anti-RNA polymerase is very reassuring and significantly reduces the risk of a patient developing SRC.

Finally, for those patients left requiring dialysis or with poor kidney function, transplantation remains a viable option with outcomes similar to non-scleroderma patients.

It is possible to infer the diagnosis without needing a renal biopsy but it is quite common to find a kidney disease other than SRC on biopsy which requires different treatment, so it is our practice to recommend a renal biopsy on all patients with SRC if clinically appropriate.

The precise initiating factor for SRC is not clear but arterial blood vessels in the kidney seem to spasm (a bit like the hand vessels in scleroderma). This results in higher blood pressure and the cells in the walls of the renal blood vessels thicken the arteries resulting in a much smaller and abnormal vessel centre# (see figure 2). The blood supply to the kidney via these vessels is much reduced, exacerbating the whole process. In addition the abnormal vessels cause red blood cells and platelets to get damaged or destroyed as they pass through producing characteristic findings* in the laboratory. If not controlled the process tends to act as a vicious cycle as the kidney functions less well and is unable to get rid of salt and water resulting in worse blood pressure and fluid in the lungs.

It is not uncommon for patients with SRC to have acute renal failure and require either haemofiltration on ITU or dialysis on a renal ward and subsequently for patients to remain dialysis dependent. Having said that SRC is unusual among renal diseases in that a significant proportion of patients can recover enough renal function to not need dialysis even after a year of treatment.

Dr Mark Harber Renal Consultant Royal Free London, NHS Foundation Trust

Figure 1. Hypertensive retinopathy: this picture shows retinal haemorrhages and exudates in a patient with severe hypertension and SRC.

Current vessel lumen

Original vessel lumen Figure 2: A renal biopsy of a patient with SRC demonstrating narrowing of the blood vessels down to a pin-hole.

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Connective Tissue Connective Tissue Disease and Overlap Syndromes Although the causes of lupus are unknown, both genetic, hormonal and environmental, (for example sunlight) factors are known to play a part. Central to the disease process is an overactivity of the immune system, leading to an overproduction of antibodies, notably anti-DNA antibodies, important in both diagnosis and disease management.

Prof Graham Hughes

Half a century ago, the name ‘connective tissue diseases’ was coined to cover a group of conditions distinct from each other, but with a number of features in common. They include lupus, myositis, Sjögren’s Syndrome, scleroderma, mixed connective tissue disease and vasculitis. In 1983, another related condition, the anti-phospholipid syndrome (Hughes syndrome) was added.

The features in common are: 1. Women are affected more frequently than men 2. The diseases are capable affecting many organs

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3. They ‘overlap’ with one another, both in clinical features as well as in laboratory abnormalities 4. There are important abnormalities of the immune system 5. Blood vessels affected

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Lupus This disease is recognised throughout the world and predominantly affects women (female : male 9:1) between the ages of 15-50.

Medical treatment includes hydro xychloroquine (Plaquenil), widely used as maintenance therapy, steroids for more acute or severe cases, and immuno suppressives such as azathioprine, methotrexate and mycophenolate mofetil.

More recently so-called biologic agents such as rituximab (Mabthera) and belimumab (Benlysta) have proved an important advance in treatment.

Sjögren’s Syndrome This syndrome, originally described as a triad of dry eyes, dry mouth and aches and pains, is now regarded as a ‘cousin’ of lupus. Again, the central defect is an overactive immune system, leading to over production of anti bodies and widespread clinical features including rashes, enlarged glands, cystitis, joint and muscle pain, and fatigue.

Sjögren’s differs from lupus in being more common in an older age group (40’s to 60’s) and less likely to result in kidney or other major organ damage.

Nevertheless, it can cause considerable disability, with fatigue and muscle aches being marked, many patients being wrongly diagnosed as having fibromyalgia.

Any organ can be affected, but especially common are skin rashes, hair loss, pleurisy and joint pains. The disease can also lead to more serious complications, including kidney, brain or cardiac involvement.

The dry eyes and mouth are a result of infiltration of the lachrymal and salivary glands by lymphocytes and inflammatory cells, leading to impaired secretion of tears and saliva, and to an increased risk of corneal damage and of dental and oral problems.

Lupus differs from rheumatoid arthritis (RA) in a number of ways. Unlike RA, it rarely causes joint damage, for example.

A very rare complication of Sjögren’s Syndrome is lymphoma, usually presenting with chronic, marked swelling of the lymph glands.

10

As with mild lupus, the ‘maintenance’ treatment for Sjögren’s is hydro xychloroquine (Plaquenil).

Hughes Syndrome Antiphospholipid Syndrome (Aps) This is a condition in which abnormal clotting (in arteries as well as in veins) can lead to a wide variety of clinical features. The clotting abnormality is secondary to a group of antibodies known as antiphospholipid antibodies.

Clinical features include clots in arms or legs, or in internal organs such as the liver, kidney and heart.

Two organs especially vulnerable are the placenta and the brain. Clotting in the placenta in the pregnant woman leads to oxygen starvation in the foetus and a risk of abortion. Hughes syndrome is now known to be the commonest, treatable cause of recurrent pregnancy loss. The symptoms of brain involvement include stroke, balance difficulties, and multiple sclerosis-like features.

Particularly common are memory problems (many patients fearing Alzheimer’s disease) and headache and migraine – it has been suggested that Hughes syndrome is a potentially treatable link between migraine and stroke.

Treatment is with anti-clotting drugs, including aspirin, heparin or warfarin, depending on the severity.

There are overlaps between Sjögren’s, lupus and Hughes syndrome. Some 2030% of lupus patients are positive for antiphospholipid antibodies and carry the same risk of thrombosis and miscarriage as patients with Hughes syndrome.

Scleroderma In this rare syndrome, there is a progressive stiffening and thickening of the skin, affecting the fingers, hands, forearms and face. More widespread thickening can affect the thighs, chest and abdomen. The process is due to an overproduction of collagen (scar-like tissue).

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55848 RSA Vol 4_Vol1-09.qxd 27/11/2012 15:25 Page 12

Connective Tissue

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Connective Tissue Disease and Overlap Syndromes continued In more severe cases, internal organs can become scarred and immobile, including the oesophagus (difficulty in swallowing, heartburn), tendons, gut (diarrhoea and malabsorbtion) and the lungs, leading to shortness of breath and, in extreme cases, pressure on the heart. Raynaud’s phenomenon (fingers and toes frequently turning white) is common.

Mixed Connective Tissue Disease First described in the 1960’s by Dr Gordon Sharpe (in the United States) this condition, as the name implies, can include ‘mixed’ features of lupus, scleroderma and myositis.

It is very distinctive, and immuno logically marked by a single antibody – antiRNP. The clinical features are arthritis, especially in the hands, with characteristic ‘sausage fingers’, marked Raynaud’s (much more severe than in lupus), slight skin thickening (but distinct from scleroderma), frequent muscle pain (and sometimes prominent muscle weakness), and pleurisy and pericarditis.

Unlike lupus, kidney involvement is the exception. The disease often takes a ‘grumbling’ course and treatment is geared to the severity of symptoms.

Myositis Myositis ‘polymositis’ if muscles alone are affected or ‘dermatomyositis’ if the characteristic skin rash (violaceous rash on the face, eyelids and knuckles) is present – is characterised by weakness rather than muscle pain.

The ‘proximal’ muscles, upper arms, thighs, neck muscles, are most prominently affected. A common presentation is with difficulty in rising from a sitting or crouching position. In more severe cases, there is difficulty in dressing, or even, in extreme myositis, in breathing, due to weakness of the diaphragm and chest wall muscles.

The condition is caused by an infiltration of the muscles by inflammatory cells, leading, if untreated, to muscle fibre damage and scarring.

Treatment in the acute stage is with corticosteroids plus or minus

LOCAL CONTACTS

immunosuppressive drugs such as methotrexate.

Burton on Trent, Helen Nutland

Vasculitis

Bristol & Bath, Margaret Goff

This term is given to a rather wide variety of conditions in which the primary pathology is inflammation of the blood vessels. There are almost certainly a number of different causes, including viral infection and allergy, and

01283 566333 Ext. 5032 01454 310225 Email: margaretgoff@hotmail.co.uk South Cumbria/ Ruth Randall 01524 903493 North Lancs Email: peteruth@talktalk.net Eastleigh, Kathy Allen

02380 610678 Tests include an increased blood level of the muscle enzyme creatine kinase (CK), and abnormal muscle electrical activity (see in an electromyogram or EMG). the vessels involved range from small (capillaries) to medium/large arteries (eg polyarteritis nodosa). One clinically somewhat distinct vasculitic condition is Wegener's granulomatosis, in which inflammation in arteries and veins is compounded by so-called granuloma formation in the sinuses and lungs.

Fortunately, this life-threatening condition usually responds to the immuno suppressive drug cyclo phosphomide.

Our thanks to Prof Graham Hughes, Consultant Rheumatologist, The London Lupus Centre, London Bridge Hospital and to LUPUS UK for giving permission to reproduce this article which appeared in LUPUS News & Views, Summer 2012

Calling Health Professionals Contributions from health professionals for future issues of Hot News are always welcome.

Essex, Maureen Lucey

01255 473 309 Fife, Rose Bevan

01382 552272 Knaresborough, Tony Overend

01423 862551 London, Ruta Rackaityte

07702 245068 Email: rcktyt@yahoo.com Manchester, Gill Holden

01942 877259 Merseyside, Helen Lingwood

0151 280 1194 07751 333 633 Email: jonandhel@sky.com North East, Jessie Pickering

01388 527840 N. Ireland, Patience Bradley

02890 592370 Mobile:

07966 416553

North Wales, Kate Owen

01492 515834 Portsmouth and Hampshire, Alison Wright

02392 367960 & 07986 900262 Rickmansworth, Marilyn York

01923 286780 Shipley, W Yorks, Bev Myers

07903 448038 Suffolk & North Essex, Jacky March

01394 286637

Flu Jabs Have you remembered to have your flu jab this year? They are still available in November so if you have scleroderma or other auto immune disease and are eligible for any other reason, do contact your health centre and get an appointment.

Surrey, Fay Collings

01737 762005 Worcestershire, Shirley Lynch

01386 553392 If you would like to become a contact for your area please get in touch on 01270 872776 or email info@raynauds.org.uk

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Fundraising Colourthon

In the photograph are Amanda Layen and her sister-in-law. Mandy has both Raynaud’s and scleroderma so to complete the moonlight colourthon (13.1 miles) in 3 hours 49 minutes was a huge achievement. Thank you so much for your efforts on our behalf Mandy. It just goes to show what determination can do. £312 was raised.

Lands End to John O’Groats

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Myrtle Mayne kindly sent the RSA £350 in lieu of gifts for her 70th Birthday. We are most appreciative for gifts of this kind.

Thank you Myrtle.

Sincere thanks to all the following: Marg Bacon who raised £530 in lieu of gifts for her 70th Birthday

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Jean Walton organised a Memorial Football Match In Memory of her son Robert raising £150

Thanks for the £200 raised by the Solent Wives who held Bring & Buy sales.

Great North 10K Run In July, the ladies of Purleigh (Essex) Quilters and the Stitch and Craft Group held an Exhibition of their work.

The Quilters group made, then raffled, a beautiful Dresden Plate design quilt.

This raised a total of £451.00. The photograph shows Carol Smith, leader of the quilters presenting the cheque to fellow-member, Gill Hagyard, also a member of the RSA. The proceeds of the Exhibition were divided between the two groups and Pauline Potter, leader of Stitch and Craft donated £150.00 of their profits to the RSA. A grand total of £601 was thus raised for the RSA.

Birthday Gift

Heather Lee continued her support with a Bingo Event, sending us a cheque for £250

Nick (far right) with friends who completed the cycle ride over 12 days cycling from Lands End to John O’Groats. Unfortunately Nick pulled his hamstring and was unable to complete the course but everyone who had sponsored him wanted the money to be put towards our Cool Million, in memory of Nick’s Mum, Christine Jewer. RBC Wealth Management, kindly donated £200 towards Nick’s event. Total £1345

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We have recently heard from Barbara Buchan who has to date raised over £16,665 by selling unwanted jewellery items sent to her by members and which she has sold at various Fayres.

Barbara has asked us to say that she can now only sell scrap gold and silver, so please do not send any other items as Barbara is no longer in a position to sell them once her current stock has been sold.

If you would like an acknowledgement, please enclose your phone number so that Barbara can call you to say the package has arrived.

Barbara Buchan, 6 Meadowlands, Woolpit, Bury St Edmunds, Suffolk IP30 9SE

Quilting and Embroidery Exhibition

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Wendy Liddle has once again opened her garden as part of the National Garden Scheme for which we benefitted by £164 Ben Rigden completed a triathlon at Rigmere raising £170 for the RSA as his Grandma Betty Harringon suffers from this conditon.

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John and Shirley Lynch together with group members from Worcestershire, have once again given out publicity items and raised awareness of the RSA at the Pershore Plum Fair raising £333.60.

A very successful Hog Roast was organised by Nikki Hunt’s parents, which raised a total of £3,665. This includes a generous donation from Christopher Ruse at the Deutsche Bank.

Sincere thanks to Cheryl and Pete Scully who took part in the Great North 10K Run and raised a totral of £812.50. A bonus was a donation by Brian Scully’s employers AMEC who made a donation of £600 which was presented to Anne at the Conference by Brian Scully.

Nikki’s local pub, the Black Bull sent £34.87 from their customers’ collecting box and Nikki’s employers, Fix Protocol, had a loose change collection raising £182.61.

Thank you Nikki for encouraging your friends, family and colleagues to raise funds for the RSA. We are most appreciative.

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Fundraising Medway Mile

The Ship Inn

Great North Swim

Our thanks to Ray, Joan, Brenda and Leslie, son Steven and grandson Ethan, pictured above, who took part in the Medway Mile raising £340 plus Gift Aid, for the RSA. Very many thanks to all.

From left to right Billy, Heather, Lorraine and Jimmy. Heather Smith and friend Lorraine have been continuing with their support for the RSA by raising a huge amount of £3,567 at the Ship Inn in Fraserburgh through a Charity Horse Race at which, landlord, Mark Forsyth kindly provided the food. This money was raised in memory of Lorraine’s daughter Amanda Jamieson.

Myself and two work colleagues wanted to go one better than just completing the Great North Swim which I had completed two years ago, for the Raynaud's & Scleroderma Association, so we decided that we would complete all five of the British Gas one mile open water swims for our chosen charity. The challenge we set out to achieve at the start of the year gained extra meaning and was even more personal when my Mum passed away in February.

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Manchester 5K Run

Wedding Donation

Kelvin Turner, Becky Arber and Mike Thrussell. Becky raised £515 by running as a crayon, in the Big Fun Run Manchester 5K. Becky kindly raised this money in memory of her Aunt, Jean Blakeley.

RSA Trading Company Limited We now have a Trading Company for payment of our stock items with a separate bank account. When ordering stock please make cheques payable to RSA Trading Co. Ltd. Cheques for donations, fundraising, memberships etc, need to be made payable to RSA.

At this stage my wife and good friend joined in the challenge to raise even more funds. Our first event went smoothly in London on a glorious sunny day in May at the Victoria Docks near the Millennium Dome. However the other four swims proved more challenging as three were cancelled due to poor weather conditions or poor water quality.

Susie and Robbie Palmer kindly donated £496.25 from their wedding.

Nationwide Building Society

Please Note Donations and activities on these pages are up to the end of September. There simply isn’t enough room to publish all events in this issue but we are most appreciative and all donors have been thanked personally. If you send or have sent a photo with your cheque, we will try to include it in the next issue of Hot News.

Hannah Old, Anne Mawdsley, Cheryl Oliver (Manager), and Karen Littley, receive a cheque for £500 from the Alsager Branch of the Nationwide Building Society (Cheshire Building Society). This money was raised by customers putting coupons into a box for their charity of choice.

We managed to complete the Great Manchester swim at Salford Quays but the Great East Swim in Ipswich and the Great North Swim in Windermere were cancelled due to high winds. Each time an event was cancelled we made our way to the Lavender Patch pool in Hilton, Derbyshire to complete our commitments of a one mile open water swim. Unfortunately our last swim was cancelled at Strathclyde Country Park due to poor water quality levels so again we returned to the Lavender Patch pool to get the job done.

We all enjoyed the challenge and the training along the way and felt it was a fitting tribute in memory of my lovely Mum who suffered without complaint with this debilitating condition for so long.

To date I have raised £2,935.

Danny Reddings Well done and thank you, Danny!

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Adverts

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Fo

Christmas Cards while stocks last!

Wording inside all cards

‘Warmest wishes for Christmas and the New Year’ Twin pack of 10 cards 5 of each design as illustrated Size 137mm x 137mm Price £3.50 (plus 75p p&p per pack) Please make cheques payable to RSA Trading Co. Ltd

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55848 RSA Vol 4_Vol1-09.qxd 27/11/2012 15:25 Page 16

Adverts Green Help

Turtle Doves are wrist warmers and fingerless gloves rolled into one. They’re designed to be worn on the wrist all day helping to keep your wrists and hands warm. Made from recycled jumpers, they are environmentally friendly and not only do they look and feel great but they are practical too. Every pair of Turtle Doves is unique; they come in all the colours of the rainbow... but they’re all green!

Prices range from £10 plus £2 p&p For further details or to place an order visit: www.turtle-doves.com or call 01743 344702.

Anne’s Tip - These fingerless mittens are really comfortable and have an added bonus. Instead of taking them off, leave on all day by using as wrist warmers and by slipping out the thumb, you can then put a thicker pair of gloves or mittens over the top.

Steering Wheel Grip I have just changed my motability car and it came with a new steering wheel grip. I therefore have a spare one if anyone would like it call the office on 01270 872776.

Regional Meeting Cardiff

Cool Million Draw Very many thanks to everyone who sold raffle tickets for the Cool Million Prize Draw. We are still awaiting a final figure which will be announced in the next issue of Hot News.

Anne Dr Tom Lawson

A very enjoyable meeting was held in Cardiff on 8th October at which Rheumatology Consultant, Dr Tom Lawson talked about the services available to Raynaud’s and scleroderma patients in Wales. He then answered questions from members in what proved to be a most interesting and informative session for all concerned.

Publication costs for this issue of Hot News are supported by GSK GSK have no editorial input or review of the content of this newsletter and the opinions expressed are the opinions of the RSA and/or the individual authors and may not necessarily reflect the opinions of GSK.

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Did You Know?

Discounted Royal Mail Stamps If you receive Pension Credit, Employment and Support Allowance, Incapacity Benefit or Unemployability Supplement, you can buy up to 36 stamps in either books of 6 or 12 at Royal Mail Christmas 2011 prices. The offer is available from 6 November until Christmas Eve (24 December) Stamps can be purchased from any Post Office. Vouchers were delivered to every residence between 8 and 18 October If you need to speak to someone about the offer, you can contact Royal Mail Customer Services on 08456 016 248.

A Guide for Disabled People Look out for RADAR’s latest publication "If only I'd known that a year ago..." which includes information for disabled people, their families and friends'. It provides an introduction to relevant services, rights and facilities. It is a definitive guide of discounts for disabled people as well as information about incentives and benefits. Covering areas such as accommodation, aids and equipment, education and employment, discrimination, health and social services, transport, sport and leisure, benefits and personal relationships, it gives all the information needed to 'start the ball rolling' and the signposts to gain more detailed knowledge as required.

National Key Scheme Also, invaluable, the National Key Scheme for accessible toilets.

Accessible toilets are the ones that have been built or adapted so that disabled people can get access into them and to use them.

The keys also fit a lot of these new selfcleaning street toilets. The cost of a key can pay for itself within a short time.

National Trust Policy National Trust (England) has an admission policy for disabled people

which admits the "necessary companion" or personal assistant of a disabled visitor free of charge, on request, while the normal membership, or admission fee, applies to the disabled visitor. To save having to ‘request’ a companion's free entry each time you go, you can apply for an 'Admit One' card to be issued. There's no charge for the card, it is in your name but it takes quite a long time to arrive so book early!

Disabled Person’s Railcard I have a Blue Badge parking permit does this make me eligible for a Disabled Persons Railcard?

No. Being a Blue Badge holder does not, in itself, entitle a person to qualify for a Disabled Persons Railcard. The Blue Badge scheme is designed to give parking privileges to people with mobility problems who have difficulty using public transport. It is run by local authorities who have the flexibility to use their discretion when issuing badges.

So whilst many of the people who have Blue Badges may be candidates for a Railcard, there are many who would not (for example, people with short term illnesses and conditions or parents of children who need to transport bulky medical equipment). Therefore we cannot accept the Blue Badge alone as grounds to issue a Railcard.

I have a local authority concessionary bus pass - does this make me eligible for a Disabled Persons Railcard?

No. Holding a concessionary bus pass does not, in itself, entitle a person to qualify for a Disabled Persons Railcard.

Concessionary bus passes are administered by local authorities who have the flexibility to use their discretion when issuing passes. So whilst many of the people who have a bus pass may be candidates for a Railcard, there are many who would not (for example, people with short term illnesses and conditions). Therefore we cannot accept the bus pass alone as grounds to issue a Railcard.

Can I get a discount on my Oyster card if I have a Disabled Railcard?

Disabled Persons Railcard discount is available on Oyster pay as you go in London. Disabled Persons Railcard holders can register their Railcard discount onto their Oyster card to get the following discounts: 1/3 off Oyster Off-Peak pay as you go single fares on National Rail, London Underground and Docklands Light Railway services.

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1/3 off Oyster Off-Peak Daily price cap on National Rail, London Underground and Docklands Light Railway services Railcard discounts can be registered on an Oyster card at any London Underground ticket office or at a National Rail ticket office that issues Oyster cards. These discounts are for the Disabled Persons Railcard holder only.

Access to Work An Access to Work grant is money for practical support to help you do your job. It’s for people with a disability, health or mental health condition.

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The money you get can pay for things like specialist equipment, travel when you can’t use public transport or a communicator at a job interview.

How much you get depends on your circumstances. It is only available in England, Scotland and Wales. Any money you get doesn’t have to be paid back and won’t affect your other benefits.

Comments and Contributions We welcome input from our members and supporters. These could be tips which you have found to be helpful, news of events taking place, comments on Hot News etc. in fact anything which you feel would be of interest or help to other members. We very much appreciate photographs taken at events so do remember your camera!

PUBLISHED BY THE RAYNAUD’S & SCLERODERMA ASSOCIATION

112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Websites: www.raynauds.org.uk www.scleroderma.org.uk EDITOR: Anne H Mawdsley MBE Charity Reg. No. 326306

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Raynaud's & Scleroderma Association © Copyright 2012. All Rights Reserved.

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