Neurological Alliance Survey
As part of its campaigning work, the National Neurological Alliance wants to understand more about the experiences of care received by people affected by neurological conditions. The link above is to a current national survey open to anyone living with a neurological condition, which is open until Monday 15th September 2014.
Where are the new Clinical Commissioning Groups in the South West?
From April 2013 Clinical Commissioning Groups will be responsible for designing local health services in England. They will do this by commissioning or buying health and care services including:
- Elective hospital care
- Rehabilitation care
- Urgent and emergency care
- Most community health services
- Mental health and learning disability services
Find out where they are in the South West using SWANO's CCG map via this link
Somerset alliance endorsed by Baroness Finlay
The patron of a national patient organisation, Baroness Finlay, has endorsed the recently formed Somerset Neurological
Alliance. The alliance, which first met in December 2011, comprises local
patients and carers with an interest in neurological
conditions. It is in touch with patients,
carers and user-led groups representing a range of neurological conditions, including MS,
Parkinson’s, stroke, Huntington’s disease and
other rarer conditions such as encephalitis and
Download a copy of their first newsletter here
Complete the Somerset Alliance survey
The survey can be completed by anyone in Somerset who has a neurological condition, or their carer, and results will be published in a public report, which will be shared with health and social care commissioners in the county: www.somersetneuro.org.uk.
Health and Social Care Bill amendment on commissioning for less common conditions
The Alliance's Health and Social Care Bill sub-group has continued to press the issue of commissioning for people with less common neurological conditions. To add strength to Neurological Alliance's voice, it has built a coalition of 27 organisations with a similar interest, including Royal Colleges of Psychiatrists and Physicians, Help the Hospices and Pancreatic Cancer UK.
Baroness Finlay tabled two amendments at report stage of the Bill, aimed at ensuring clinical commissioning groups will be required to collaborate when commissioning services for people with less common conditions . In advance of this the NA placed an article in House magazine for parliamentarians and their press release on the issue was picked up in the Observer.
Because the NA's amendments were not moved at report stage, it is currently exploring whether to table a further amendment at the Bill's Third Reading in the Lords and it has discussed concerns with the Shadow Health Team at a recent small roundtable event.
The NA's latest intelligence is that the Bill will pass from the Lords to the House of Commons on 20 March, where it will conclude its passage through Parliament .
National Audit Office (NAO) report campaign - Services for people with neurological conditions
The NA's campaign around the NAO report has resulted in over 1,200 sign ups to the e-action. 77% of MPs have now heard about the campaign and 92 have signed the NA's Early Day Motion calling for an outcomes strategy for neurology. The NA has thanked everyone for their your support so far and is urging people to maintain the pressure by continuing to promote its e-campaign through newsletters, Twitter and Facebook.
It is expected that the Public Accounts Committee (PAC) report on the NAO's findings will be published on Friday 16 March. This report will mark the commencement of the second phase of the campaign, the focus of which will be to call on the government to implement the recommendations made by the PAC ahead of the government's formal response later in the spring.
Key elements of the campaign's second phase will include a roundtable event on outcomes for neurology, hosted by the NA, and a reception in Parliament, taking place on 1 May.
Highlighting the benefits of Regional Neurological Alliances - Stronger Together is launched today
The NA has launched Stronger Together, a publication highlighting the benefits to commissioners, clinicians and GPs of working with Regional Neurological Alliances – click here to find out more.
If you are interested in finding out more about regional groups – click here here
Long term conditions outcomes strategy
The Department of Health (DH) will be publishing a Long Term Conditions Outcomes Strategy late in 2012, the scope of which it is currently envisaged will include neurology. Development of the strategy will start with a two day event this week at which the DH will bring together a broad range of health organisations to consider current proposals for the strategy and seek input from those in attendance. The NA will be present at this event, and is working with other neurological organisations attending to help ensure that the neurological community is presenting strong, united messages. The NA has expressed thanks and appreciation to everyone who has sent in their thoughts already on what good outcomes for their condition would look like.
Rare Disease Strategy consultation
In February, the Department of Health launched a consultation for rare diseases. According to this plan, earlier diagnosis of a rare condition and better coordinated care will help improve the quality of life for people with rare diseases and their families. The closing date is Friday 25 May 2012.
Children and young people's health outcomes
The Children and Young People's Health Outcomes Forum is gathering views on the health outcomes that matter most for children and young people, click here for more information. The deadline is 30 April 2012.
NICE Commissioning Outcomes Framework
Despite the barrier presented to all of us – the short time frame and the complicated nature of the forms – many NA members responded to this consultation and worked with the alliance on its submission.
Action for M.E.
Action for M.E. has launched a campaign to draw attention to the ignorance, injustice and neglect surrounding M.E. They have over 2,000 supporters, but their ambition is to have 10,000 people take action for M.E! Add your name to their call for action, add their twibbon and support the Time for Action campaign on Facebook and Twitter.
Carers Week survey
The theme of Carers Week, 18 to 24 June, this year is In Sickness and In Health, exploring the impact the social care cuts have had on carers. Carers Week are trying to reach 3,000 carers this year, so please complete the survey and share the link with your contacts if you can.
Care and Support Alliance
The Care and Support Alliance held a mass lobby day on 6 March to show how important social care reform is to families across England. Get involved in their campaign or follow @Carelobby2012 on Twitter!
Dying Matters Coalition writing competition
The Dying Matters Coalition, led by the National Council for Palliative Care, is running a writing competition in order to stimulate more open discussion of dying and bereavement. The competition, ‘Final Chapters', encourages people to write about their feelings and thoughts around end of life care. Find out more
Over £100m will be invested in NHS Clinical Research Facilities
On 1 March, the Government announced that the National Institute for Health Research will invest over £100m in NHS Clinical Research Facilities to develop new treatments to benefit thousands of patients. The money will be spent on research nurses and technicians at 19 of the facilities around the country. Read more.
Latest news - February 2012
A better deal for neurology - email your MP now
Since 2005, when the Department of Health introduced its National Service Framework for Long-term Conditions, people with neurological conditions have had better access to health services but key indicators of quality, such as the rate of emergency hospital readmissions, have worsened. Read the the National Audit Office press release here or download the full report here (PDF).
The Neurological Alliance, of which SWANO is a member organisation, is calling on the government to introduce a national strategy to ensure that every last penny spent on neurology goes towards improving services and tackling the postcode lottery that the millions of people with a neurological condition face. Email your MP now via the Neurological Alliance website by following this link.
A Neurological Alliance for Somerset?
On 24th October a group of people interested in the possibility of establishing a neurological alliance for Somerset met in Taunton. The meeting was a great success and there was real enthusiasm amongst those present to take the initiative forward and to develop a local alliance.
Somerset LINk supported the initiative and, for more information or to be kept up-to-date with developments, please contact Lucy Nicholls at the Somerset LINk Office (contact details below). You can download the presentations from the meeting below (all are PowerPoint documents). For more information about Somerset LINk and to learn about what neurological alliances do, please visit this page of the Somerset LINk website.
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2 Bowden's Business Park
Download presentations here:
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