News & Events

Amaretti Chamber Orchestra

Personal Health Budgets Survey

We would like to invite you to join in a project working to understand the potential impact of Personal Health Budgets on people with musculoskeletal conditions.

After discussions with the Department of Health, we have developed a questionnaire to seek the opinions of people with musculoskeletal conditions on this initiative.

A personal health budget aims to allow people to have more choice, flexibility and control over the health services and care they receive. At the heart of a personal health budget is a care plan, the agreement between the primary care trust and the individual that sets out the person's health needs, the amount of money available to meet those needs and how this money will be spent. The initiative, which has already been introduced for social care, is being trialled at 61 sites, 20 of which are described as “in depth” pilots. Invitation to join the trial was launched in 2009. About 1,500 patients, most with long term conditions, have so far been recruited. As musculoskeletal conditions have not been specifically considered in the piloting, Arthritis Research UK will use this survey to identify the issues raised by people with arthritis/MSDs as one way to bring there needs to the attention of the Department of Health.  

The survey is available online at: www.arthritisresearchuk.org/personalbudgets

Kirsty Walker

Director of Policy & Communications

Changing Faces Survey

We are keen to understand better the needs of patients with disfiguring conditions and whether they are able to access the help and support they need. We have designed three surveys which can be responded to online using survey monkey in which we will be endeavouring to find out about the current services that are available to provide psychological and social support for people who are living with a condition, injury or marking that affects their appearance:

We are asking adults age 16 and over who live in the UK about their recent experience of support services, what has helped in the past and recommendations they have for the future.

We are asking people who care for a child about provision of support for their child, and/or other members of their family.

We are asking health professionals about their patients' needs and the services available to them. We would also value their opinion on what additional service or support would be useful to particularly what they think our Changing Faces Practitioner development.

We are interested in both people who have used Changing Faces services before, and those who have not..

The surveys are available through our website at www.changingfaces.org.uk

Many thanks for your time.

Best wishes

Henrietta Spalding

Scleroderma Survey

You are invited to participate in a European-wide scleroderma research study by completing an on-line questionnaire.

The study is supported by the Federation of European Scleroderma Associations (FESCA) of which The Scleroderma Society is a founder member.

Ann Tyrrell Kennedy, the President of FESCA has written:

Answering the questions about your symptoms on the attached questionnaire will help both you and others who have scleroderma. It is quite simple and you do not have to look up dates or medications.

The questionnaire is part of a research programme designed to find out what kind of help people with scleroderma need. The research study is called “Characterization of Psychosocial, Symptoms and Illness Perception in People with Scleroderma,” and it is a European study that results from a Canadian study.  It is only for people who have been diagnosed with scleroderma or mixed connective tissue disease.

The investigation is being conducted at the University of Minho, Portugal. The researchers in charge are Ângela Maia (coordinator) and Catarina Leite (psychiatry researcher and patient). This project has the support of FESCA.  Its main purpose is to determine issues that are important for people living with scleroderma, and so it includes questions about symptoms you  might experience, as well as psychological, social, employment, and financial issues. It also asks about your ability to obtain appropriate healthcare.

This is your opportunity to help focus our research into areas that you have identified as important to you. Your participation in this study only involves completing a questionnaire. It is voluntary and confidential.  Your name is not attached to your answers.  The questionnaires will remain active in the study until June 30, 2011.

To access the survey, please click on this link: www.surveymonkey.com/s/sclerodermaUK

IMPORTANT ANNOUNCEMENT

It was announced on Friday December 10th 2010, by Pfizer, that the drug Thelin, other name Sitaxentan, is to be withdrawn from the market on the grounds of safety.

Patients who presently take this drug should not be unduly concerned and must not stop their drug abruptly.
They will be contacted by their specialist PH team in the coming days and be transitioned to another therapy.

Walk for Skin 2011

The British Skin Foundation is pleased to announce details of the Walk for Skin in 2011. As well as the guided city and parkland walks that you've become accostomed to; we are also offering a series of walks aimed at the more adventurous among you.

If you participate in a " walk for skin event "  don't forget to add  the Scleroderma Society to the registration form and we will receive 50% of your sponsorship.  Let us know if you have taken part and feel free to send any pictures and a write up of the event to:
susie@sclerodermasociety.co.uk for inclusion in "Scleroderma News".
Thanks for your support!

Click here for more...

European Scleroderma Observational Study (ESOS)

ESOS is a new study funded as part of the EULAR Orphan Disease Programme and co-ordinated by the University of Manchester in the UK. It aims to compare the effectiveness of different immunosuppressant treatments currently favoured by clinicians treating early diffuse cutaneous scleroderma. It will do this by collecting and analysing routine clinical information (e.g. laboratory test results and skin scores) from participating centres across Europe, following the informed consent of patients.

Treatment, in all cases, will be decided by clinicians and patients as per usual clinical practice and patients will be followed up in the usual way. Participating in ESOS, therefore, does not mean that patients receive any additional therapies or procedures. ESOS will focus on four treatment ‘protocols':

• Methotrexate (an immunosuppressant treatment)
• Mycophenolate mofetil (an immunosuppressant treatment)
• Cyclophosphamide (an immunosuppressant treatment)
• No immunosuppressant treatment (because not all patients with early diffuse scleroderma are treated with immunosuppressant treatment)

New Website

Scleroderma Australia is the national association for people with scleroderma, their families and friends.
It was formed by joining together existing state organisations who shared a vision for elevating the cause of scleroderma sufferers in Australia - "together we are stronger."
Scleroderma Australia is not-for-profit and funded by member states, individual and corporate donations.

http://www.sclerodermaaustralia.com.au/

Shop online and raise money for the Scleroderma Society

We have launched a new online fundraising webshop.

The Scleroderma Society is asking its supporters to shop online at http://buy.at/sclerodermasociety and raise money at no extra cost for the society.

Over 100 retailers are accessible through the webshop, including Tesco, Marks & Spencer, John Lewis and Waterstones. Many retailers provide exclusive offers to the webshop, such as discounts or offering free delivery to the customer, providing more reasons for supporters to buy products through the webshop.

The webshop is straightforward to use and no technical knowledge is required. Look out for special offers. For example, Tesco are offering £5 for every new customer who makes a groceries transaction.

The webshop facility is such a simple but effective idea. We receive a commission on each purchase you make. Donating to our organisation couldn't be easier!