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The National Audit Office (NAO), which is an organisation set up to scrutinise public spending, has published a ‘progress review’ into ‘Services for people with a neurological condition’.

More information about the report, which was published on the 10th of July, can be found here: http://www.nao.org.uk/report/services-for-people-with-neurological-conditions-progress-review/

The report checks on progress made since an inquiry by the Public Accounts Committee in the House of Commons in 2012, and found ‘mixed’ progress had been made in terms of implementing the Committee’s earlier recommendations around improving services.

The three recommendations against which the NAO judged progress to be poor were:
• “using the clinical commissioning group outcomes indicators set, joint strategic needs assessments and health and wellbeing boards to ensure that all people with neurological conditions have appropriate access to services
• “mandating joint health and social care commissioning of neurological services
• “ensuring that everyone with a long-term neurological condition is offered a personal care plan, covering both health and social care”

The Neurological Alliance, of which the Dystonia Society is a member, is planning to follow-up on the report and urge the Public Accounts Committee to run a new inquiry into the provision of services for people with neurological conditions. Read the response from the Neurological Alliance here...

I only took up my new role as chief executive of the Dystonia Society on the 8th of July, and already I have been amazed by the dedication, commitment and expertise of the people I have met and spoken to so far. I really feel as though I have joined a very special organisation, and hope that I can help to continue and grow all the fantastic work happening across the UK.

Whether it is the Society’s members, staff, the incredible volunteers who support our work, or the people who are taking on the most amazing challenges to raise the funds that we need to keep going, the Society is made up of a truly brilliant collection of people who all come together to make a difference.

I know that I have big shoes to fill following on from our last chief executive Paul King, and I also know that I have a huge amount to learn. Most crucially I really want to hear from anyone affected by dystonia about where we can make a difference. If we know what challenges people are facing, what has worked for them and what hasn’t, then we know where we can try to help.

It’s been incredible to hear stories even over my first few days from people telling me how the Society has helped them, whether that is through things like the fantastic, dedicated support offered by our helpline, through people coming together at events or local groups, or through the information and advice people have found online.

Because if there is one thing that will help me in my new role it is hearing from people affected by dystonia about what we can do to help. For those who need help and advice our telephone helpline is available Monday to Friday from 10:00 to 16:00 on 020 7793 3650, or you can email support@dystonia.org.uk.

But if you have any advice or information for me, then I want to hear that too. My email address is guy@dystonia.org.uk and it would be great to get as much information and advice as possible about people’s thoughts and experiences.

I’ll be getting out to as many groups and events as I can in the coming months, so I hope to meet as many people as possible to hear your views directly. But most of all, to all the thousands of people who contribute their time, expertise and resources to support the Society, I wanted to finish by just saying: Thank You!

A new Dystonia Society support group has been launched on Facebook for people affected by dystonia in Scotland.

We need your help. Please tell us how you manage your dystonia. 

  • In what ways does dystonia affect your daily living?
  • How is your communication with medical professionals?
  • Do you have tips for others about coping?

The Neurological Alliance has launched its inaugural neurological patient experience survey. Closing date 15th September.

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