Month: April 2016

Co-care survey

Researchers from the Southampton University, together with the National Council for Palliative Care, are conducting a survey of how volunteers provide support for family caregivers at home. The information from the survey will be used to build a picture of the kind of support that volunteers provide nationally. To take part in the survey or find more information please see here.


Commissioning for value – important CCG data

NHS England’s Right Care programme has now released updated ‘Commissioning for Value packs’ which set out a range of local performance and value indicators for each local CCG, with comparisons to similar CCGs. CCGs are encouraged to use of this localised information to support discussions about prioritising areas for change and utilising resources, and help to drive improvements in healthcare quality, outcomes and efficiency. These packs include information on neurological conditions as a grouping and are available to view here.

Do check out the local Cumbria CCG data!

NHS England updates  


Community neurology project

The NHS England Community Neurology Project Conference will be held on Wednesday 29th June at Royal Holloway, University of London, Egham, Surrey TW20 0EX. To register an interest in attending, please email Kate Moules on Further details will become available shortly.


Specialised services consultations

On March 21st NHS England launched a 30 day public consultation on a number of proposed new products for specialised services, including service specifications and clinical commissioning policies. These include materials relevant to neurology, such as service specifications for paediatric onset multiple sclerosis and for rare hereditary neuropathies for children and young people. All products under consultation can be seen here.


Clinical reference group restructure for specialised commissioning

NHS England has now concluded its consultation process on the proposed restructuring of clinical reference groups, which make decisions relating to the commissioning of specialised services. The Alliance submitted a response which is available to read here.

 Sustainability and transformation plans

NHS providers and commissioners have this year been asked collaborate across local areas to produce local five-year Sustainability and Transformation Plans (STPs). Commissioners and providers have been grouped into 44 areas and are now required to co-produce STPs setting out how their areas will respond to the challenges facing health services. The plans are required to be submitted by June 2016 for approval in July. Further information is available from the Neurological Alliance website and the NHS England website.

CCG assessment framework

NHS England has also launched a new Improvement and Assessment Framework for CCGs, which will include ratings published online to show patients how their local health service is performing. The framework is intended to increase the accountability of CCGs and encourage focus on key objectives. More information is available here.


NICE updates


Neurology clinical guideline

NICE has now published the final scope and equality impact assessment for the forthcoming NICE guideline on suspected neurological conditions, along with the stakeholder comments that were received during consultation and NICE’s responses to these comments. These include comments from the Neurological Alliance and a number of member organisations. All documentation is available on the NICE website. If you would like to be involved in the further development of this guideline but have not yet registered as a stakeholder, you can do so via the link at the top of the page.


MND quality standard

NICE has now concluded its consultation on the draft motor neurone disease quality standard. The draft standard is available to view here.


Falls prevention

NICE has opened an engagement exercise into its forthcoming quality standard on falls prevention. The documentation and comments form are available here. This exercise will contribute to shaping the draft standard which will then go through a consultation process.

Patient experience survey – launch June 2016

Arlene Wilkie CEO the Neurological Alliance has written “We would like to remind members that this summer we will be launching the second iteration of our neurological patient experience survey. We intend to launch the survey in June and hope that members will assist in disseminating the survey as widely as possible. Last year’s survey received almost 7,000 responses thanks to the support of our members, and we hope to surpass that this year. We will be in touch over the coming weeks and months with more information. The questions and responses from the 2014 survey are available here.”

This was a vitally important survey giving a wealth of information recounting the pressures experienced by families living with a neurological condition.

Watch this space for the new survey

Update on clinical leadership in neurology

The National Neurological Alliance is continuing to campaign and engage with NHS England on the future of clinical leadership for neurology services, following their decision to end the role of National Clinical Director for Adult Neurology and reduce support for clinical networks. The latest updates areavailable on the Alliance website, along with an updated briefing on the issues and background.

Cumbria Neurological Alliance co-signed the Alliance’s letter to the Secretary of State for Health and to the Times newspaper regarding NHS England’s decision to cut the role of National Clinical Director for Adult Neurology. Letters were also sent in support of our view by the chairs of all-party parliamentary groups with an interest in neurology, and by representatives of over 20 professional clinical organisations with an interest in neurology such as the Association of British Neurologists. A copy of these letters as well as a response from Ben Gummer MP, (Parliamentary Under-Secretary at the Department of Health), is available on the Alliance’s website.

In addition, with the help of members a number of parliamentary questions were placed in February and March on the future of clinical leadership for neurology. The questions and responses can be found at the following links: 29133; 27966; 27532; 27534; HL6082; 26275;Commons25394; HL7369.

Arlene Wilkie CEO The Neurological Alliance states “We are now working with supportive parliamentarians on follow-ups to our previous letters and questions, as we feel the responses provided so far are unsatisfactory. In addition we are meeting with NHS England colleagues in April, along with the Association of British Neurologists, to discuss in detail NHS plans for maintaining clinical leadership for neurology going forward. We will continue to press NHS England for clear proposals to assure ongoing clinical leadership and will keep members updated on any developments.”