Northern Areas Neurological Alliances

Here's the seventh 2009 issue of 'Neuro News', a monthly bulletin that will aim to keep you informed on the activities of the national Neurological Alliance & of the neurological community more widely.

NEURO NEWS JULY 2009

ALLIANCE NEWS
NEUROLOGICAL ALLIANCE MOVING TO A NEW OFFICE SPACE

On Monday 27 July, the Alliance moved to its new office space in the Dana Building of the Science Museum, 165 Queens Gate, London SW7 5HE (www.danacentre.org.uk). We invite you to visit this exciting building at the Alliance's AGM on Tuesday, 24 November.

We would like to express our thanks to Jon Barrick, Neurological Alliance Trustee & Stroke Association Chief Executive & all at our Stroke Association office for hosting us, for their support & their welcoming us as part of their team. We intend to keep in touch & continue our collaboration with them in achieving our joint aims.

NEUROLOGICAL ALLIANCE MANIFESTO

Development of the Neurological Alliance Manifesto has continued to dominate our work this month. Many of our member organisations have played an active role in developing the manifesto, for which we are very grateful.

The set of core asks that make up our Manifesto have been printed on a promotional postcard & a limited print run has shown the card to be very popular amongst our member organisations. We are planning a month of joint campaigning this Autumn, for which the card will be reprinted on a larger scale, & organisations will be asked to distribute the Manifesto to their staff & volunteers.

Working with Trustees & staff of member organisations, we have held a number of meetings & teleconferences with key stakeholders, to pursue our Manifesto asks. We have received an encouraging response from the Department of Health (DH) & Association of British Neurologists (ABN) as to the possibility of achieving concessions to our asks & will keep members updated as & when they occur!

If you want to support or have any queries about this work, please email manifesto@neural.org.uk

NEUROLOGICAL ALLIANCE ESTABLISHES FORMAL POLICY GROUP

The first meeting of the new formal Alliance Policy Group took place on Monday, 13 July & was very well attended by staff & volunteers of our member organisations, large & small. The Policy Group will meet every two months in London & will be open to one representative from each of our national member organisations.

At this first meeting, the Group elected its own Chair & Vice-Chair, & we are delighted to welcome Clare Moonan, Health Policy & Campaigns Manager at the Parkinson's Disease Society, & Val Wells, Service Development Manager at the Dystonia Society, to these roles. As Chair, Clare will be invited to attend all meetings of the Executive Committee of the Alliance &, working with Lucy Brazg, our Chief Executive, to advise Trustees on decisions on behalf of the 64 member organisations of the Alliance.

We want as many of our member organisations as possible to be involved. Please email Tahani Saridar at tahani.saridar@neural.org.uk or call 020 7566 1540 if you would like to join the Group, or require any further information. The next meeting of the Policy Group is taking place on Tuesday, 8 September from 10am to 12pm in our new office at the Dana Centre, 165 Queen's Gate, London SW7 5HE.

ENGAGING WITH NHS CHOICES: IMPROVING THE QUALITY OF NEUROLOGICAL INFORMATION

The Neurological Alliance collaboration with NHS Choices to improve the quality of neurological information & advice available on-line is a continuing priority of the Alliance. The deadline for submission of information on the second batch of conditions being reviewed has now been set for Thursday, 24 September. We are happy to receive case studies for all conditions throughout the length of the review.

To contribute to this project or for more information, please contact Tahani Saridar at tahani.saridar@neural.org.uk.

NEW MEMBERS

We are very pleased to welcome the Alzheimer's Society & Sarah Matheson Trust as full members of the Alliance & look forward to working with them to identify & achieve our joint aims.

MEMBER ORGANISATION & RELATED NEWS

UPCOMING NICE GUIDELINE ON NON INVASIVE VENTILATION FOR MND

The National Institute for Health & Clinical Excellence (NICE) is starting to work on a new guideline on the use of non invasive ventilation for motor neurone disease (MND). They are at the very beginning of this process & are currently inviting stakeholders to comment on the framework. They will be holding a meeting for stakeholder organisations before the consultation period on 29th July at NICE Manchester offices, which will give interested parties the opportunity to discuss the proposed scope before There is more information about the project on the NICE website here - http://guidance.nice.org.uk/CG/Wave20/52.

To see if you could qualify as a stakeholder, please visit http://www.nice.org.uk/ourguidance/niceguidancebytype/clinicalguidelines/shregistration/shreg_form.jsp.

CQC ANNOUNCEMENTS & CONSULTATION

Changes to regulation of health & adult social care
The Care Quality Commission (CQC) consultation on registration is still open & members who have not yet contributed are invited to take part. New registration standards for all health & adult social care providers are being introduced from April 2010 & will apply to NHS Trusts for the first time. Standards for Better Health for the NHS & National Minimum Standards are being replaced by new Registration Requirements - essential common quality standards across the care sector.

The CQC Guidance about Compliance makes clear to care providers what they must do to meet new registration requirements. Their consultation on the draft Guidance began on 1 June & submissions are welcome until 24 August.

To find out more about the consultation & how you can take part, please visit http://www.cqc.org.uk/getinvolved/consultations.cfm

2009/10 care services assessment published
The CQC have published plans setting out how they will assess the provision & commissioning of health & adult social care services over the next year. They will be carrying out periodic reviews & special studies across the care sector as we move towards a single registration system for care providers in 2010.

To find out how the CQC will assess care services in 2009/10, please visit http://www.cqc.org.uk/newsandevents/newsstories.cfm?cit_id=34934&FAArea1=customWidgets.content_view_1&usecache=false

Special reviews & studies announced
Special reviews & studies are projects that look at themes in health & social care. The CQC have now agreed the topics for their special reviews & studies programme for 2009/10.

The Neurological Alliance has submitted an outline case to the CQC. You can express your support for a cross-neuro specialist review by writing to Baroness Young, Chair of the CQC at barbara.young@cqc.org.uk & Cynthia Bower, Chief Executive at cynthia.bower@cqc.org.uk.

To find out about the CQC special reviews & studies, please visit:
http://www.cqc.org.uk//newsandevents/newsstories.cfm?cit_id=34949&FAArea1=customWidgets.content_view_1&usecache=false

GOVERNMENT LAUNCHES THE BIG CARE DEBATE

The Government is offering everybody the chance to have their say on the reform of adult care & support in England in a campaign called the Big Care Debate. The aim of this campaign is to create a National Care Service that is fair, simple & affordable. To set this process in motion, they have published a public consultation document, or Green Paper, called 'Shaping the Future of Care Together'. In it, they spell out the options for reform - how a new system could be organised & paid for.

They are asking everybody what they think of these options & which ones they would like to see adopted. There are many ways to take part in this debate - such as by attending a regional event or feeding in your comments on-line. To find out how you can get involved or to register for regular email updates, please visit http://careandsupport.direct.gov.uk.

DEMENTIA RESEARCH SUMMIT

On 22 July, the Medical Research Council (MRC) and Department of Health (DH) hosted a Dementia Research Summit. Alzheimer's Society & the Alzheimer's Research Trust are calling on the government to utilise this opportunity & work towards a dementia research plan. They have highlighted the importance of greater investment in dementia research, asking the government to triple its annual investment in dementia research to £96 million over the next five years to provide better care today, better treatment tomorrow & to avert financial crisis.

To support this campaign or for more information, please visit http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1038.

FORTHCOMING EVENTS

SAVE THE DATE! NEUROLOGICAL ALLIANCE AGM SET FOR TUESDAY, 24 NOVEMBER

The Alliance is holding its 2009 Annual General Meeting & a mini-conference on Access to Services on Tuesday, 24 November. To be held at the Dana Centre, this day will also give you the opportunity to see the Alliance's new office space. Please save this date: more information will follow shortly.

For the full stories reported here, please visit the Neurological Alliance website www.neural.org.uk or sign up to our Neural Hub http://neuralhub.ning.com where you can discuss these news items directly with other Neurological Alliance members.

ALLIANCE NEWS - NEUROLOGICAL ALLIANCE MOVING TO A NEW OFFICE SPACE
The national Neurological Alliance has been offered excellent rent-free accommodation in the Dana Building of the Science Museum, 165 Queens Gate, London SW7 5HE (www.danacentre.org.uk). The American philanthropic organisation the Dana Foundation, which contributed to the construction of this inspiring building, has a strong interest in brain research & leads Brain Awareness Week. The Alliance will have access to spacious meeting rooms & two hot desk spaces for visiting member organisation staff or Trustees. The hope is that the Dana Centre, which includes public spaces for science learning events, will become a hub for the neurological community. The Alliance intend to move at the end of July when full new contact details will be issued.

Moving means leaving the Stroke Association, who have been generous & supportive hosts of the Alliance for 3 years.

NEUROLOGICAL ALLIANCE MANIFESTO
The Neurological Alliance has developed a set of core asks that make up its Manifesto, which is available at www.neural.org.uk . Many member organisations have played an active role in developing the Manifesto, for which the Trustees & staff of the Alliance are very grateful. The official launch of the Manifesto will take place this autumn, at which point there will be available:
· a longer version, containing supporting evidence,
· ideas on how to use the Manifesto locally & nationally, &
· lots of hard copies of the short version for staff & contacts

The draft Manifesto is being publicised now because the Alliance will be discussing the asks in a number of meetings with government stakeholders over the next few weeks. These are the things which we collectively believe would move us from a vision of excellent services to a reality of high-quality joined-up care throughout England. Please, take any opportunity to talk about the Manifesto asks: together we can make a really strong case for action.

If you want to support the Alliance's work or receive hard copies of the Manifesto 'postcard', please email manifesto@neural.org.uk. You could also write to your local MP - for guidance & links on how to campaign in Westminster, please visit http://www.neural.org.uk/campaigning/campaigning-in-westminster

NEUROLOGICAL ALLIANCE ESTABLISHES FORMAL POLICY GROUP
The Trustees of the Alliance have agreed that our member organisations should have more scope to debate & discuss Alliance policy & to plan our collective work. They have therefore decided to replace our old informal Parliamentary Affairs Network with a more formal Policy Group.

Members are invited to nominate a staff member to join the new Neurological Alliance Policy Group. This group will nominate its own Chair, who will be invited to attend all meetings of the Executive Committee.

The Policy Group will meet every two months in London & is open to one representative from each of our national member organisations. The first meeting will take place on Monday 13 July from 10am to 12pm at the Parkinson's Disease Society, PDS National Office, 215 Vauxhall Bridge Road, London, SW1V 1EJ. For more information, contact Tahani Saridar at tahani.saridar@neural.org.uk or call 020 7566 1540.

ENGAGING WITH NHS CHOICES: IMPROVING THE QUALITY OF NEUROLOGICAL INFORMATION
As readers may be aware, the Neurological Alliance is working with NHS Choices to improve the quality of neurological information & advice available on-line. At an event held on 12 May at the Imperial War Museum, London, hosted by NHS Choices, it was agreed that the immediate focus for collaborative working would be the review of the website's Health A-Z.

23 June saw the launch of the review, which will be carried out over a 12 month period, with neurological conditions being reviewed in four batches. If you would like to improve the information relating to neurological conditions, or provide case studies, please contact Tahani Saridar at tahani.saridar@neural.org.uk or call 020 7566 1540.

MEMBER ORGANISATION & RELATED NEWS

NUMBERS OF PEOPLE WITH MS HIGHER THAN PREVIOUSLY ESTIMATED
The MS Society has funded a study of GP records, which provides an accurate estimate of the number of people living with a diagnosis of MS in the UK. The results show that there is likely to be around 100,000 people with MS in the UK - a 20 per cent increase on previous estimates of 85,000 people. The revised figure has major implications for health & social services & the study is a precursor to a pilot MS Register, which will provide much more information on exactly how MS affects individuals.

Knowing how many people have MS is important so that health & social services can provide the right types of care & support. In many areas of the country people do not currently have access to all the nursing care, drugs & treatment regime that they so desperately need.

(Source - MS Society website www.mssociety.org.uk/news_events/news/press_releases/numbers_pwms.html)

Read the full Strength in Numbers briefing document at http://www.mssociety.org.uk/downloads/MS_prevalence_study_briefing_June_2009.da86e70b.pdf

Download the Strength in Numbers campaign leaflet at http://www.mssociety.org.uk/downloads/Strength_in_Numbers2NEW.42fc66de.pdf

NHS EVIDENCE & THE LESSONS LEARNED REVIEW
As you may already be aware, the National Library for Health (NLH) & its specialist libraries became part of NHS Evidence on 1 April 2009. The NHS Evidence portal & search engine became available on 30 April 2009 at www.evidence.nhs.uk

As part of ongoing developments, the specialist libraries have changed their names & are, as a group, now called specialist collections. This individual collection is now NHS Evidence - neurological conditions.

Following the move from the National Library for Health to NHS Evidence, the Specialist Collections (formerly the NLH Specialist Libraries) are undergoing a Lessons Learned Review over the summer, looking at what works well & what we should be focusing on in the future. As part of the review, NHS Evidence have put together a survey open to all members of the specialist collection advisory, stakeholder & external reference groups. If you would like to feed into this review, the survey can be found at http://www.surveymonkey.com/s.aspx?sm=VTHTV5XNK7UiKT81zV03EQ_3d_3d - the closing date is Friday 10th July.

(Source - Neuro Specialist Collection newsletter)

NEURO SPECIALIST COLLECTION EMAIL UPDATE

The Neuro Specialist Collection produce an email update on their activities, which many of you may find useful. If you would like to sign up, please visit www.library.nhs.uk/neurological/Page.aspx?pagename=NEWSLETTER

HEALTH NEEDS ASSESSMENT FOR LONG TERM NEUROLOGICAL CONDITIONS IN NORTH EAST ENGLAND
A health needs assessment (HNA) for Long Term Neurological Conditions (LTNC) has been carried out by the North East Public Health Observatory (NEPHO) on behalf of the Regional Neuroscience Commissioning Network. The HNA has been developed in parallel with the North East Strategic Commissioning Plan for Neurosciences. The key policy document underpinning this HNA is the National Service Framework (NSF) for Long-term Conditions. The purpose of this HNA is to provide an overview of the demand for neurological services across the network, although it also describes the data that are available & the problems & limitations associated with them.

(Source: NEPHO, 5 June 2009)

DEPARTMENT FOR WORK & PENSIONS LAUNCH RIGHT TO CONTROL SCHEME
On 11 June, the Department for Work & Pensions launched a national consultation that could dramatically change the way every disabled person lives their life. Right to Control is a shake up of the way disabled people can use the funding they receive from the state. The policy forms part of the Government's radical welfare reforms & will for the first time enshrine in legislation the principle that disabled people are the experts in their own lives & have the right to choice & control over their support.

Under the new scheme, disabled people will be able to choose who delivers their services & how they receive them. Disabled people & their organisations are being asked to help shape this initiative - by taking part in the consultation they can influence how the Right to Control works.

(Source - News Distribution Service for Government and the Public Sector)

Individuals and organisations can take part in the consultation by visiting www.odi.gov.uk/right-to-control or calling 020 7449 5093.

For the full article, please visit http://www.neural.org.uk/updates/69-DWP-launch-Right-to-Control-scheme

CARERS STRATEGY ONE YEAR ON: NEW HOTLINE FOR CARERS LAUNCHED
A one-stop information & advice service for carers was officially launched on 10 June by Care Services Minister, Phil Hope. The Carers Direct (www.nhs.uk/carersdirect) hotline aims to make England's 5 million carers' lives easier & reduce the time & stress of searching out essential advice. The launch comes on the one-year anniversary of the publication of the Government's Carers Strategy. Later this year, they carers will also receive more support to get or return to work.

Carers Direct is complemented by Caring with Confidence (www.caringwithconfidence.net) a training course available to carers face-to-face, online & by distance learning. Caring with Confidence inform carers of their rights, the services available to them & networks which might support them. The Department of Health is investing around £4.6 million a year into Caring with Confidence.

(Source - News Distribution Service for Government & the Public Sector)

For the full article, please visit http://www.neural.org.uk/updates/68-Carers-Strategy-One-Year-On:-New-hotline-for-carers-launched

UK RATIFIES HUMAN RIGHTS TREATY FOR DISABLED PEOPLE
On 8 June, the Minister for Disabled People, Jonathan Shaw, announced UK ratification of an international treaty that enshrines the human rights of disabled people.

The United Nations Convention on the Rights of Persons with Disabilities is a powerful & explicit statement, which states that disabled people must be able to enjoy, on an equal basis, the same human rights as others.

(Source - News Distribution Service for Government & the Public Sector)

For the full article, please visit http://www.neural.org.uk/updates/67-UK-ratifies-human-rights-treaty-for-disabled-people

FORTHCOMING EVENTS

SAVE THE DATE! NEUROLOGICAL ALLIANCE AGM SET FOR TUESDAY 24 NOVEMBER
The Alliance is holding its 2009 Annual General Meeting & a mini-conference on Access to Services on Tuesday 24 November. To be held at the Dana Centre, this day will also give you the opportunity to see the Alliance's new office space. Please save this date: more information will follow shortly.

WEST BERKSHIRE NEUROLOGICAL ALLIANCE CONFERENCE
Brains, Pains & Gains
Date: 9 July 2009
Time: 9am to 5pm.
Venue: Arlington Arts, Mary Hare School, Newbury, RG14 3BQ

West Berkshire Neurological Alliance (WBNA) is hosting a one-day conference on managing pain. Speakers include pain consultant Dr Stephen Allen, Neuro-Rehab consultant Professor Christine Collin & Neuro-physio Penny Lilley.

Further information is available on the WBNA website: www.wbna.org.uk

For any enquiries, please contact WBNA on 01635 202605 or email conference@wbna.org.uk.

For the full stories reported here, please visit the Neurological Alliance website www.neural.org.uk or sign up to our Neural Hub http://neuralhub.ning.com where you can discuss these news items directly with other Neurological Alliance members.

Six new titles have been produced by the Brain & Spine Foundation:

• Subarachnoid haemorrhage


• Angiogram


• Brain & spine scans


• Coiling of brain aneurysms


• Craniotomy, &


• Epilepsy

Guidelines have been published by the Royal College of Physicians, to provide clinicians with the knowledge & tools to use BT effectively. If used according to the guidance, BT can improve the lives of those suffering from spasticity & of those caring for them, as well as reducing the overall costs of ongoing care.

The guidance is essential reading for all clinicians dealing with stroke patients, people with multiple sclerosis & patients with severe traumatic brain injury.

The guidelines cost £20. For more information, check out: http://www.rcplondon.ac.uk/pubs/brochure.aspx?e=272

NHS CHOICES INVITE ALLIANCE MEMBERS TO COLLABORATE IN IMPROVING NEUROLOGICAL WEBSITE CONTENT
The Neurological Alliance is collaborating with NHS Choices in a new programme of work to improve the quality & relevance of the information they provide on neurological conditions & services for people with those conditions. Neurological Alliance national members are invited to contribute to the development of the content of the NHS Choices Health A-Z & have their websites linked in to NHS Choices.

On 12 May, from 11.00 until 14:00, the Alliance will co-host a free information event with NHS Choices in London for all Neurological Alliance member organisations. You will be able to learn about ways that your organisation can take better advantage of NHS Choices, including some ways that NHS Choices can assist you in return for linkage.

ANN KEEN MP CHAMPIONS THE DEVELOPMENT OF A NATIONAL DATASET FOR LTNCS
On 24 February, a debate on epilepsy was sponsored at the House of Commons by Chris McCafferty MP. Ann Keen MP, Parliamentary Under-Secretary for Health Services, participated in this debate, expressing the Government's commitment to the development & implementation of a national Minimum Dataset for Long-Term Neurological Conditions.

To read the full debate, visit: www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090224/halltext/90224h0009.htm#column_54WH

DEPARTMENT FOR WORK AND PENSIONS ANNOUNCE HELP FOR DISABLED PEOPLE
An additional £8 million to help disabled people remain in work will be made available this year through the highly successful Access to Work programme, the Minister for Disabled People, Jonathan Shaw, has announced. This extra funding will ensure disabled people who are in employment or have a firm job offer do not miss out as a result of the economic climate. In the longer term the Government is committed to doubling the budget from £69m to £138m by 2013/14.

Access to Work, a specialist disability programme run by Jobcentre Plus, provides practical advice & support to disabled people & their employers to help them overcome work-related obstacles resulting from disability.

To find out more information on Access to Work visit: www.jobcentreplus.gov.uk

LAY & EXPERT MEMBERS APPOINTED TO THE NEW NATIONAL QUALITY BOARD
The lay & expert appointments to the new National Quality Board, which will focus on the role of quality in the NHS in driving improvements for patients, were announced on 17 March by Health Minister Lord Darzi.

Establishing the National Quality Board was a key commitment in High Quality Care for All, Lord Darzi's review of the NHS. The Board will provide strategic oversight & leadership on quality across the NHS.

The appointments include leaders from the charity & third sectors, academia, social care & the Royal Colleges, bringing a wealth of experience as patients, carers, clinicians & academics.

The National Quality Board will be chaired by NHS Chief Executive David Nicholson & will advise the NHS on priorities for improving quality. It will oversee the development of quality indicators & consider how quality is measured.

DEPARTMENT OF HEALTH ANNOUNCE A NEW AGENCY FOR ASSESSING MENTAL HEALTH SERVICE DELIVERY
A new agency to ensure national mental health policies bring about real improvements for patients & carers will start work on 1 April, Care Services Minister Phil Hope has announced. The new agency - the National Mental Health Development Unit - will succeed the current National Institute for Mental Health (NIMH) in England.

The change follows a review of mental health service delivery, taking into account Lord Darzi's NHS Next Stage Review & the need for more personalised services. From April, the ten strategic health authorities will oversee much of the regional & local delivery of new mental health policies, with support from the new Development Unit, to be led by Dr Ian McPherson, former head of the National Institute for Mental Health.

More information about the unit can be found on its website http://www.nmhdu.org.uk which will be available from 1 April 2009.

NEUROLOGICAL ALLIANCE TRUSTEE INTERVIEWED ON CITY TALK RADIO
Maureen Kelly, Neurological Alliance Trustee & Manager of Neurosupport, was interviewed regarding Neurosupport & Brain Awareness Week on City Talk Radio in Liverpool yesterday. To listen to Maureen's interview, please go to http://neurowords.tumblr.com

EVENTS

END OF LIFE CARE STRATEGY IN NEUROLOGICAL PATIENTS - NORTH CONFERENCE
Two events this year, including one for the North, are intended for all professionals who have contact with neurology patients, & will explore the common problems faced by professionals caring for people with long term neurological conditions like Parkinson's Disease, Multiple Sclerosis & Motor Neurone Disease. They will help attendees to explore problems that are often difficult to handle & forge links with palliative care teams from attendees own local areas.

Dates for these events have now been set, & the North Conference will be held at Northern General Hospital Post Graduate Centre on Tuesday, 8 September 2009

The programme for these events has now been set, with some speakers still to be confirmed for the North Conference. For more information or a booking form, please email Sue Thomas at sue.thomas@rcn.org.uk.

MANAGING LONG-TERM CONDITIONS EVENT
Taking place on 7 April 2009 in Harrogate, this event is for all those involved with people living with long term conditions. A choice from 48 sessions from 6 conference streams is offered, relating to:
* Helping People Take Control
* World Class Commissioning For LTCs
* Integrating Services To Support LTCs
* Providing World Class LTCs' Services
* How Telehealth & Telecare Can Support LTCs
* Creating A Workforce To Support LTCs
* Advisory Board

For more information, please visit: www.managinglongtermconditions.com

For the full stories reported here, please visit the Neurological Alliance website www.neural.org.uk or sign up to our Neural Hub http://neuralhub.ning.com where you can discuss these news items directly with other Neurological Alliance members.

The second 2009 issue of Neuro News, the Neurological Alliance's monthly bulletin that aims to keep you informed on the activities of the Alliance & of the neurological community more widely, follows.

Check out the regional 'Levers for Change' event being held in the North East on 26 March, also the Regional Neurological Alliance Spring Forum being held at Darlington on 22-23 April.

DEPARTMENT OF HEALTH FUNDS REGIONAL LONG-TERM CONDITIONS EVENTS
Following the success of the national 'Levers for Change' event, held in London last Autumn, the Department of Health [DH] has asked each English Region to provide its own conference that is tailored to local circumstance.

The national 'Levers for Change' event was co-hosted by The Neurological Alliance & the DH's Long-Term Conditions Team (formerly CSIP) & looked at ways to improve communication between commissioners & the 3rd Sector.

The 10 regional events will be based on SHA boundaries & will take place on various dates this spring. They will similarly consider ways of improving links between commissioners, the third sector & service users & carers, & will have a strong local focus.

The date for the North East event is 26 March. For more information, contact your local DH Lead for Long-Term Conditions. Contact details can be found at www.ltc-community.org.uk

REGIONAL NEUROLOGICAL ALLIANCE SPRING FORUM DATE RELEASED
The RNA Forum is held twice per year & provides an opportunity for people working with RNA's at local level to join together, hear about developments at national NA level, share experiences & learn about developments & good practice.

For the first time & in response to member requests, the Spring Forum is to be held over two days. It is being held on 22-23 April at Darlington.

In addition to the above, there will be the opportunity to hear about the leading-edge Neurosciences Network in the North East & to learn more about the Quality Neurology pilot project, which is an audit tool developed by the MS Society, MND Association, Parkinson's Disease Society & Ataxia UK & generated by people affected by these conditions.

For more information contact Nicolette Williams - nicolette123@o2.co.uk

DEPARTMENT OF HEALTH PUBLISH NEW GUIDANCE TO HELP COMMISSIONERS PROVIDE PERSONALISED CARE PLANS
The document, 'Supporting People with Long Term Conditions: Commissioning Personalised Care Planning', will help the Government achieve its goal that by 2010 every one of the 15 million people with a long term condition will be offered a personalised care plan. The guidance explains how NHS & social care services can provide personalised care & services for people with long term conditions.

The guidance document has been informed by the NHS Next Stage Review consultation & the 'Your Health, Your Care, Your Say' consultation on community services & shaped by around 80 stakeholders in health, social care, third sector & patient representative groups.

This document is available on the DH website: www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_093354

A CONSTITUTION FOR SOCIAL CARE: LAUNCHED BY DEMOS, THE MS SOCIETY & LEONARD CHESHIRE DISABILITY
Demos, in partnership with the MS Society & Leonard Cheshire Disability, & supported by In Control, launched a new proposed Social Care Constitution, on 4 February, at the Westminster Central Hall.

In the context of Government's reform of social care, the Social Care Constitution seeks to set out the rights & responsibilities of the people who use social care services, staff who deliver it, government & local authorities, & the public.

The full document is available to download from the Demos website: www.demos.co.uk/publications or the Neurological Alliance website: www.neural.org.uk/updates/090205socialcareconstitution.html

DEPARTMENT OF HEALTH LAUNCHES NEW STROKE ADVERTISING INITIATIVE
The DH, together with The Stroke Association, has launched a major three year campaign to promote public awareness of stroke. This new advertising initiative forms part of the National Stroke Strategy, launched by the DH in December 2007. The Strategy resolved to break down the main barrier to progress in stroke care, which is that too few people understand what a stroke is or what to do about it.

The campaign is aimed at those who are most likely to be in contact with someone at risk of a stroke & will encourage them to become 'stroke savers' by dramatising the effects of stroke on the brain, emphasising the value of intervention & instilling the need for immediate 999 action. The FAST test, which requires an assessment of three specific signs of stroke, will form the basis of the advertising message.

Visit: www.stroke.org.uk to see the advert for the public campaign & find out more about the campaign & the work of The Stroke Association.

DEPARTMENT OF HEALTH COMMISSION REVIEW OF PRESCRIPTION CHARGES FOR PEOPLE WITH LONG-TERM CONDITIONS
Professor Ian Gilmore, President of the Royal College of Physicians, was asked by the Government to carry out a review of prescription charges for people with long term conditions & to report to Ministers this summer. Prescription charges for people with cancer will be abolished on 1 April.

The DH is hosting an online survey on his behalf. Responses to this survey will help him formulate his recommendations to Ministers about how to exempt people with long term conditions from prescription charges & how an exemption can be phased in. The closing date for comments is 27 February.

If you would like to contribute to the review the following link will take you to the survey: www.info.doh.gov.uk/questionnaire/prescriprew.nsf

LAUNCH OF CARERS DIRECT
Forming part of the Government's 'New Deal for Carers', Carers Direct (www.nhs.uk/carersdirect) went live on 26 January. 16 February marked the launch of Carers Direct on NHS Choices.

Drawing on the lives, experiences & needs of today's carers, Carers Direct provides a single source of carer specific information & advice. It covers finance, benefits & the law, health & well-being, as well as enabling carers to search for local services & support groups. A free telephone advice line will follow in April, together with an email & postal enquiry service.

It is highly important that the information on this site should be accessible to all carers. Although it is recognised that many carers may not have direct internet access, a friend or family member will do. Please pass on the details of Carers Direct to all your contacts & help raise awareness of this valuable information source.

NEW SCHEME LAUNCHED TO HELP PEOPLE ON SICK LEAVE BACK TO WORK
In a pilot scheme launched on 19 February by Phil Hope, Care Services Minister, & Lord McKenzie, Work & Pensions Minister, people on sick leave will be assisted back into work more quickly.

The 'Fit for Work' Service Programme of Piloting, backed by £13million, will test out how sickness absentees can be helped to recover & supported to get back to work more quickly than would otherwise be the case. They will test a range of different ways of providing support, to identify what works best. Each pilot will test personalised, back to work support for people off sick. The range of services within a pilot should go beyond just healthcare & join up local services.

The Departments of Health & Work & Pensions are jointly calling for organisations to come forward to participate in the pilot process. The pilots are expected to begin later this year.

The Government is also increasing funding for 'Access to Work', a programme which helps disabled people gain & stay in employment.

LONG-AWAITED DEMENTIA STRATEGY PUBLISHED
Memory clinics will be set up in every town in England, doctors will get extra training to recognise the early signs of dementia & every hospital & care home will have a senior clinician with responsibility for dementia care, as part of a £150m five-year dementia strategy.

Ministers said they were confident the new clinics, to which patients will be able to self-refer, would ultimately save the NHS money, as early diagnosis enables people with dementia to be treated earlier & remain independent for longer. The clinics would offer assessment, support, information & advice to those with memory problems & their carers.

Campaigners such as the Alzheimer's Society welcomed the plans but warned the strategy's success would depend on it being adequately funded. 'There is so much to do. It is essential the strong leadership from the Department of Health continues so that these plans become a reality', said Alzheimer's Society chief executive Neil Hunt.

The strategy can be downloaded from: www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Olderpeople/NationalDementiaStrategy/index.htm

RCN CONSULTS ITS MEMBERS ON ASSISTED SUICIDE
The Royal College of Nursing has begun consulting its members on assisted suicide. Chief Executive & General Secretary Peter Carter said: 'Many people have strong views on assisted suicide, an issue which provokes compelling arguments & passionate support on both sides of the debate'.

He said recent high profile cases had prompted the Royal College to offer its members 'the opportunity to share their views on this sensitive but important issue. I urge all members to make their voice heard by participating in the consultation, either through forums, branches, as individuals or through regional & country boards'.

The college has published a briefing document summarising political & legal positions on assisted suicide, arguments for & against, & potential issues for nurses. Assisted suicide is illegal in the UK but the government's position has been challenged several times in court. For details, see: www.rcn.org.uk

Over the next three years adults who require additional support from Northumberland County Council will be increasingly given more choice & control over the care packages they receive.

Northumberland Care Trust is working on behalf of Northumberland County Council's adult social services to change the way support is arranged for people who use services. These changes are in line with the government's 'Putting People First' proposal, which makes a national commitment to the complete transformation of the social care system by 2011 - http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndguidance/DH_081118

For the first time, people who use adult social care services will have the choice & control over how money is spent & what support & services they have. This is what local & central government have been calling 'self-directed support' & 'personal budgets'. In the future this will replace the traditional care package & will apply to all adults eligible for social care support.

Visit the Northumberland Care Trust to find out more about their 'Putting People First' programme - www.northumberlandcaretrust.nhs.uk

In May 2008, a MS Service Users' Forum was set up following meetings between Northumberland Care Trust staff & people using Benmar House (MS Research & Relief Fund), also in conjunction with the MS Society's South East Northumberland Branch.

The primary aims of the forum were to:
• Involve people with MS in improving the services of the Northumberland Care Trust, & to make access to these services easier
• Develop the awareness & understanding of the complexities of MS, & highlight the impact of the condition on people's lives

Initially, the forum's area of interest related to South East Northumberland only. The intention was always to use it as a 'blue-print', to expand to other areas of Northumberland &, in 2009, to widen it's role, to embrace other long-term neurological conditions prevalent in the county (for example Parkinson's Disease, Motor Neuron Disease, Brain Injury, Epilepsy, & others).

The forum is a friendly group made up of:
 People with long-term neurological conditions such as MS & Parkinson's Disease
 People affected by such conditions
 Representatives from voluntary sector agencies
 Northumberland Care Trust staff
 Health care professionals

For people in Northumberland affected by long-term conditions, to understand what changes you feel would improve the services we need to hear from you. If have suggestions or comments to make, or if you want to become involved, you could come along to the meetings held every two months, or so, at the Choppington Welfare (near Bedlington). For further details, please contact John Dowswell, Operational Manager, Northumberland Care Trust; John.Dowswell@northumberlandcaretrust.nhs.uk;  01670-394493

The 'End of Life Care for People with Dementia' Conference, hosted by the National Council for Palliative Care (NCPC), is taking place on Thursday 12 February 2009, featuring keynote speakers:

Phil Hope MP, Minister for care services

Professor Jane Gilliard, Social Care Lead, Older People's Mental Health Programme.

Please see the attached document for information on this conference or visit the NCPC website www.ncpc.org.uk. For any enquiries contact Theresa Tsui, Events Organiser, on 020 7697 1520 or email Theresa at t.tsui@ncpc.org.uk.

Dementia_Programme_&_Booking_120209.pdf

The Neurological Alliance will be issuing a monthly bulletin throughout 2009 that will aim to inform members, people affected by long-term conditions & others interested in them, on the activities of the Neurological Alliance & of the neurological community more widely. You. too, can contribute - see later - & there's news of a new online community - see 'Neural Hub'.

The first issue follows:

NEURO NEWS JANUARY 2009

AGM
Thank you to all members who attended our AGM & 'Levers for Change Learning Event', co-hosted by the Department of Health Long-Term Conditions Team (LTCT), on 24 November. The final version of the Alliance's Annual Report & presentations from the day are available at www.neural.org. Working with the LTCT, we plan to take the information from the day & turn it into a 'Guide to Shaping Services', which will be available to members online & in hard copy. Ten regional events are also being developed by the LTCT: to find out more contact the team directly by emailing Tom.Loader@dh.gsi.gov.uk

MAKING WELFARE REFORM WORK FOR PEOPLE WITH A NEUROLOGICAL CONDITION
On 24 November, we also hosted a parliamentary reception in collaboration with a group of our member organisations to draw attention to how the forthcoming welfare reforms could affect people with a neurological condition. A packed room heard inspiring presentations from Lord Walton, Dr Diane Playford, summarizing research on supporting people with MS who want to stay in work & Sarah Joiner, talking about her experiences of working with MS. The Alliance briefing note sent to all MPs is attached. If you are interested in becoming involved in the Parliamentary Affairs Network of Neurological Alliance member staff, please contact Tahani Saridar at tahani.saridar@neural.org.uk

ROYAL COLLEGE OF PHYSICIANS WORKING GROUP ON LOCAL SERVICES FOR PEOPLE WITH A NEUROLOGICAL CONDITION
The Royal College of Physicians (RCP) Working Group, on which Lucy Brazg serves as a member, are planning to report on the range of local health services neurological patients need & expect at district level. Members of the Neurological Alliance were invited to present evidence on the current state of services & on their aspirations for the development of services to a special meeting of the RCP Working Group. The meeting was very well-received, both by patient groups & clinicians, with 10 organisations presenting & many more submitting written evidence. The Report will be published later this year & is likely to be a joint publication of the ABN & the RCP.

INQUIRY INTO ACCESS TO SPECIALIST CARE
The All-Party Parliamentary Group for Muscular Dystrophy has launched an Inquiry into access to NHS specialist care for people living with rare conditions. The Inquiry will focus on access to specialist multi-disciplinary care; commissioning & funding; workforce planning & the role of care co-ordinators. The APPG investigation follows a number of hard hitting reports published by the Muscular Dystrophy Campaign, which reveal that life expectancy & quality of life is being seriously affected by a 'postcode lottery' in service provision. The APPG is calling on interested parties to submit evidence by February 2009. Find out more at http://www.muscular-dystrophy.org/news/mps_put.html

At the same time, the All Party Parliamentary Group for Parkinson's (APPG) has launched an inquiry into access to health & social services for people with Parkinson's & their carers. Written evidence is to be submitted by 9 February. Find out more at http://www.parkinsons.org.uk/about_us/news/news_items/general_news/appg_inquiry_launched.aspx

LONG TERM NEUROLOGICAL CONDITIONS RESEARCH INITIATIVE
The website of the Long term Neurological Conditions Research Initiative has been revamped. You will find updates on all the on-going research projects and information about the latest research to be commissioned at www.ltnc.org.uk

NEW TEAM MEMBER
Nicolette Williams has joined the Alliance to support development of our network of Regional Neurological Alliances. Nicolette has many exciting ideas to harness the capacity of the Alliance & help us work together to champion local implementation of the NSF. She will be making contact with all our member organisations over the next few months, but in the meantime, do contact her if you have ideas, contacts or information that could help this work. You can e-mail Nicolette at nicolette123@o2.co.uk

NEW TRUSTEES
Welcome to Sue Millman, Chief Executive of Ataxia UK, Alan Pulford of the Parkinson's Disease Society & Russell Stronach of the Northern Neurological Alliance who were elected as Trustees at the AGM. A full list of Trustees is available at www.neural.org.uk

NEW REPORT ON PROBLEMS IN ACCESSING SERVICES
Epilepsy Action recently launched a report into problems people encounter accessing neurological services. You can read more about it at www.epilepsy.org.uk/timeforchange or read a 'Sunday Telegraph' article about the report's findings http://www.telegraph.co.uk/health/healthnews/4213991/Lives-put-at-risk-because-of-neurology-delays.html

NEW BOOK: CHARITY BEGINS AT HOME
Michael Koe is a Trustee of the Alliance & the founder, with his late wife Sara, of the PSP Association. Michael has written a moving account of Sara's illness & tragic death from PSP & of the establishment of the Association. It is a fascinating read for anyone interested in achieving better services & treatments for neurological conditions. Order a copy for £20 plus p&p at www.pspeur.org

NEURAL HUB
Join our new on-line community, the Neural Hub, for everyone working for better services for people with a neurological community. You can reach the hub through our website www.neural.org.uk or directly at http://neuralhub.ning.com/. The Hub is a place to post up any information or links that you think may be of interest to the neurological community & to ask questions or initiate debates. Membership has to be approved by the Alliance team, but is open to all those working in or with our member organisations.

'Neuro News' bulletins will be issued every month in 2009. Please let Tahani Saridar know if you have events or news of relevance to the neurological community - Tahani.Saridar@neural.org.uk; 0207 5661540

Help the Aged recently launched a campaign to urge people to alert their local council or authority to faulty areas of paving in their communities. The Northern Areas Neurological Alliances support this initiative - it's not only older people but also many people affected by long-term neurological conditions who need to maintain their mobility & independence through safer environments.

Downloadable cards to notify your local authority about dangerous paving, also to let Help the Aged know that you have reported dangerous paving, are available at www.helptheaged.org.uk/en-gb/Campaigns/Neighbourhoods/FallsPrevention/?&MSHi.

Lynne Barr Neurosciences Network Lead

Glenys Marriott Chair of Neurosciences Network

Laura Bailey
Neurosciences Network Support Officer Email

Representatives From:
North East Primary Care Trusts

Local Authorities

Employment Agencies

NEPHO (North East Public Health Observatory) (see: http://www.nepho.org.uk/)

Independent Sector Neurological Alliance (TVDNY)

Specialist NHS Neurological Services - e.g. Walkergate Park (see: http://www.ntw.nhs.uk/kb/?p=contact)

National Long Term Conditions Team (see: http://www.ltc-community.org.uk) Email

The North East Neurosciences Network was set up in March 2008.

It is a commissioning led network, working together with different organisations, voluntary sectors, people with neurological conditions and their carers to improve services across the region.

The standards we are aiming for are outlined in the Government's National Service Framework for Long Term Neurological Conditions, 2005.

For more information about the Network click here for our Information Sheet.

North East Neurosciences Network
Unit 20, Middlesbrough PCT
Riverside House,
High Force Road
Riverside Park
Middlesbrough
TS2 1RH

Tel: 01642 737625

Email: laura.bailey1@middlesbroughpct.nhs.uk

One Wednesday, 4 March 2009, at the British Library, London, the Meningitis Trust is holding a free conference: After meningitis - Living with the impact of meningitis & meningococcal septicaemia. The conference aims to consider the wide range of outcomes of meningitis & meningococcal septicaemia & highlight the importance of specialist support in helping those affected to rebuild their lives. The Trust is inviting all professionals who are involved in the care & rehabilitation of people who have been affected by the disease to go along. Places are limited, so those interested are being asked to register, now, to avoid disappointment. Details are given on the attached document. Contact info@meningitis-trust.org to book or for further details.

Download Conference information (PDF: 2.0MB)

If you're visiting our website, then you're an early-bird indeed. Thanks for popping around. As you can see, we're not quite there yet. Perhaps in a day or two we can slump in the chair and reach for the iced-coffee.

This event will be held at the Rheged Centre, Redhills, Penrith, to begin a consultation within Cumbria regarding service provision, particularly with regard to self-directed support.

The event is being organised by the Commissioning Support Service which is an exciting new initiative between the Motor Neuron Disease Association, the Multiple Sclerosis Society, & the Parkinson's Disease Society. The service is designed to improve the quality of neurological services by supporting & informing the local commissioning process through the direct involvement of service users & carers.

The purpose of the event will be to brief key local stakeholders on the background to this project & to seek views & involvement. Attendance is by invitation only for services users & carers, representatives from the NHS & Adult Social Care as well as local staff & branch representatives from the three voluntary sector agencies.

The NNA will be represented at the event, & a report on the outcome will be posted to this website, in due course. Following on from the event, there will be opportunities for other people to contribute to the consultation process.

The North's biggest & best independent living event will be held at the Metro Radio Arena, Newcastle. There will be over 150 exhibitors providing information, equipment & advice for disabled & older people, also a seminar & workshop programme & other attractions.

Full details are available from Disability North
Website; www.disabilitynorth.org.uk
Email; events@disabilitynorth.org.uk;
Telephone; (0191) 284 0480

The North East Strategic Health Authority is leading on the production of an Equality & Diversity Video which will be launched at the Equality & Diversity Conference on 12 November 2008. It is anticipated that the video will be reproduced & distributed to NHS North East organisations for use in training material & local conferences.

The video will comprise a series of short stories / interviews from patients & staff across all NHS organisations, & will describe their positive & negative experiences in relation to equality & diversity issues.

It is intended that the video will be thought provoking, & should include the real picture of individual experiences.

In order to create the video, the stories, thoughts & opinions of patients & staff are required. The reactions & opinions of participants will be respected at all time & the programme will deliver a fair & unbiased 'argument'. Ideally participants would tell their story in their own words on camera, however, stand-in actors can be organised if participants do not feel comfortable with arrangements. Wherever possible, anonymity will be provided to NHS organisations.

Should you be interested in taking part in the video, or know someone who would, please contact, either:
Kerry McQuade on 0191 210 6424, or Kylie Murrell on 0191 210 6404.

Their email addresses are:
kerry.mcquade@northeast.nhs.uk
kylie.murrell@northeast.nhs.uk

The MS Forum was set up in May 2008 following meetings between Northumberland Care Trust staff, people using Benmar House (MS Research & Relief fund), & the MS Society's South East Northumberland branch, with the primary aims to:

• Involve people with MS in improving the services of the Northumberland Health Care Trust & to make access to these services easier
• Develop the awareness & understanding of the complexities of MS & highlight the impact of these conditions on people's lives,

The forum is a friendly group made up of:

• People with MS


• People affected by MS


• Representatives from voluntary sector agencies


• Northumberland Care Trust staff


• Health care professionals

Initially the group is based in South East Northumberland. Using it as a 'blue print' it is intended, in the future, to expand to include other areas of Northumberland, & hopefully later to meet the needs of people with other long term health conditions.
To understand what changes you feel would improve the services, we need to hear from you. If have a suggestion or comment to make or want to become involved you could either:

• Come along to the meetings, which are held every two months at the Choppington Welfare (near Bedlington). For further details & an agenda, contact John Dowswell, Operational Manager, Northumberland Care Trust (John.Dowswell@northumberlandcaretrust.nhs.uk; phone (01670) 394493)


• Make your suggestions to David Thompson (datateastorchard@aol.com; or phone (01665) 710718)