Guest Blog: the UK’s Specialised Healthcare Alliance

Today’s guest blogger is Anna Baranski, from the UK’s Specialised Healthcare Alliance:

‘The Specialised Healthcare Alliance is a member organisation for patient groups, supported by a small number of corporate members, which campaigns on behalf of people with rare and complex conditions. At the moment, our membership includes 61 patient groups who represent people with a wide range of rare and complex conditions. We find that with a collective voice we have a much greater influence over policy and decision makers.

Most recently, we have been working on ‘QIPP’ – an NHS acronym which stands for ‘Quality, Innovation, Productivity and Prevention’ – in relation to a number of services represented by our members. ‘QIPP’ is the policy being used by the government to make huge savings (between £15-20bn) within the NHS over the next four years, while also ensuring an improvement in the quality of services.

The Alliance was concerned that the drive for efficiency savings would overshadow the vital quality improvement strand of QIPP. We therefore organised a number of workshops on particular services, including haemophilia, neurosciences, spinal cord injury and children’s services, which brought together experts in the field to discuss ways of saving money while improving quality.

We produced reports based on findings from each of the workshops, as well as a concluding report Leaving No One Behind which brings together the recommendations from all of the workshops. All of these reports can be found on our website: http://www.shca.info/SHCA%20Reports.htm.

More generally, we are interested in the structures put in place within the NHS for commissioning and providing services for people with rare and complex conditions (known as ‘specialised’ conditions) and making sure that these structures allow for the provision of the best care possible for those living with specialised conditions.

The Health Bill 2009-10, which is currently being debated in the House of Commons, sets out the coalition government’s proposals for reorganising the NHS. This includes the decision to give a large proportion of the NHS budget to GPs for them to commission services for their local area – a proposal which has gained a lot of media coverage. The proposed changes would also have an impact on the way in which specialised services are commissioned and delivered. The Alliance is currently working to influence the debate on the Bill in order to ensure the best deal for people with rare and complex conditions.

The most important point to note is that under the government’s proposals, specialised services will be commissioned by the NHS Commissioning Board. This is a new body which will have a range of functions, including overseeing the commissioning activities of GPs. However, the Board will also commission some services itself, including specialised services. The Alliance supports this decision in principle, but has been campaigning to ensure that parliamentarians and civil servants are aware of areas of the proposals where our members have concerns.

If you are interested in joining the Alliance and adding your organisation’s voice to the campaign for people with rare and complex conditions, please contact Anna Baranski on anna.baranski@shca.info. Membership is free for patient organisations and offers the following:

• Stay updated. You will be kept updated on policy developments in the area of rare and complex conditions.
• Contribute. Members are given the opportunity to contribute to the Alliance’s responses to consultation documents issued by the government and to our overall campaigning strategy.
• Meet colleagues. We hold quarterly meetings which are open to all members and provide a chance for you to meet colleagues and to share experiences and ideas, as well as discuss recent developments and the Alliance’s work.’

Nick says: if you’re a rare disease patient group in the UK, then I recommend you join the Specialised Healthcare Alliance. As individual patient groups, it’s difficult to make an impact at policy level. But together, through the Alliance, then our voice can be heard.

Guest blog: Online communities for rare diseases

Today we have our first guest blogger: Robert Pleticha, Online Patient Communities Coordinator at Eurordis (the European Organisation of Rare Diseases). Robert’s been working hard on a new project that was officially launched yesterday. I’m sure you’ll love it and that you’ll want your patient group to be involved. It’s called Rare Disease Communities and the website is: www.rarediseasecommunities.org.

Over to you Rob…

Rob says: ‘The main idea behind the project is to create an online social network for patients and caregivers living with rare diseases in order to enable the sharing of experiences and increase access to quality information. International patient organizations collaborate to develop these communities along with Eurordis and NORD (the US National Organization for Rare Disorders). Patient organizations play a key role in governing and communicating to the community, recruiting forum moderators, and being sources of information to patients and their families.

The website is split into three sections: What, Meet, and Learn.

• The What section features patient stories and blog style updates from patients and patient organization representatives.
• The Meet section is a forum, moderated by volunteers and offering human translation services across five languages: English, French, Spanish, Italian, and German. Since patients and families are spread thinly across the globe, it is vital to create a space where information can be shared with the best possible translation.
• The Learn section is a resource of information in the form of frequently asked questions, documents, recently publish news and scientific articles, upcoming events, and patient organization’s contact information.

The project started with a pilot community for Cryopyrin Associated Periodic Syndromes. This first community brought together patient organizations in the United States and France, allowing them to connect and discuss shared treatment issues. After testing the newly developed website and attempting to create a user-friendly experience, the project expanded to include communities for Alkaptonuria, Von Hippel Lindau disease, Atypical Hemolytic Uremic Syndrome, and Familial Mediterranean Fever.

Users interested in discussing these diseases register on the website. After registering, a user can upload their story on living with the disease through a link in their profile page. The story then automatically is added to the What section and is translated into all of the platform’s languages. Users can also participate in Forum discussions or post their own questions. If a user sees a message on the Forum that is not in their language (French, German, Italian, Spanish, or English), they request a translation. Within a few hours, the message is translated and uploaded automatically to the website. The user that requested the translation is also sent an email with the translated content.

Future plans for the Rare Disease Communites project include expanding to serve new diseases like Alternating Hemiplagia of Childhood and Epidermolysis Bullosa and the inclusion of summaries and links to free, full text scientific articles through a partnership with patientINFORM.

The project is part of the strategic partnership signed in 2009 between Eurordis and NORD. The communities are guaranteed by Eurordis and NORD with a view towards fostering international collaboration amongst patient groups and protecting the voice of patients from purely commercial interests.

The project is financed by European Commission, the French Telethon (AFM) and the French Federation of Pharmaceuticals (LEEM) and a diverse array of corporate partners who play no role in the operation of these communities.’

Nick says: I think this is a great project, and not just because AKU is a partner on it. All the research shows that rare disease patients suffer from intense isolation and crave the opportunity to speak to fellow patients and share their stories. I’m so impressed by the work of Eurordis: they live for their patient groups.

If you have any any questions on the Rare Disease Communities project, Rob says he’d be more than happy to receive your emails at: robert.pleticha@eurordis.org