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 firstname.lastname@example.org. 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.