Attached is the latest Neuro News bulletin from the Neurological Alliance:
Neuro_News_Jan-Feb_2010.htm
February 9, 2010
Neuro News, January-February 2010 - News from the Neurological Alliance
December 23, 2009
Neuro News, November-December 2009 - News from the Neurological Alliance
Here's the latest newsletter from the national Neurological Alliance, the last one for 2009:
Neuro_News_Nov-Dec_2009.doc
December 7, 2009
Northern Neurological Alliance: 2009 Annual General Meeting
The Inaugural Annual General Meeting of the Northern Neurological Alliance was held on 25 November 2009
Formal Minutes for the event are attached: 2009_AGM_Minutes.pdf
A copy of the Acting Chairperson's Report is also attached: 2009_AGM_Chair's_Report.pdf
For more information, please email enquiries@na-na.org.uk
November 24, 2009
Tees Valley, Durham and North Yorkshire Neurological Alliance - 2009 Annual General Meeting
TVDNY's 2009 AGM was held on 11 November
The Chairman's report on what has been a year marked by some great strides forward and consolidation, is to be found in the following attachment:
TVDNY_Report_2009.pdf
The covering page of the report is included here as a separate attachment, simply, because it provides a single sheet insight into some of what the alliance is striving to achieve, and its values:
2009_AGM_Report_Front_Page.pdf
2009 has been a tremendously busy year but much remains to be done, as was illustrated at the AGM by Jo Cole, the Alliance's Regional Co-ordinator. In presenting her 2009 Review, Jo highlighted the benefits and added values provided by the Alliance along with the challenges which have been addressed and those which lie ahead
The following document focuses, also, on the achievements delivered in relations to TVDNY's eleven work streams, on the issues and risks associated with each, and on the benefits each have provided or will deliver:
TVDNY_Review_November_2009.pdf
For more information, please email information@na-na.org.uk
November 3, 2009
Improve Care Quality Standards across the region
Care providers have an opportunity to bring about improved Care Quality Standards across the region
Sandra Lomax from SP Solutions, a consultancy organisation working with North East Improvement & Efficiency Standards & ADASS on the development of a Regional Care Quality Standards Framework for all adult care services across 12 councils in the region. These standards will exceed & compliment Care Quality Commission Standards
SP Solutions' are about to embark on a consultation process which will give care providers, service users, advocates, friends, family & other care related services & professionals an opportunity to have their say & make a difference to regional care standards in the future
Visitors to the Northern Areas Neurological Alliance website are invited into this consultation process
Consultation events for service users, advocates, advice groups, carers, family members etc will be held at the end of November at St George Hotel, Tees Valley Airport, Darlington, DL2 1RH, alternatively in December at Ramside Hall Hotel & Golf Club, Carrville, Durham, DH1 1TD
Click on the links below to book your place:
25th November: 2pm - 4pm
For service users & advocates, brokers, carers, advice agencies
http://northeastcarestandards1.eventbrite.com/
26th November: 10am - 12noon
For adult care providers (regulated & non-regulated)
http://northeastcarestandards2.eventbrite.com
26th November: 2pm - 4 pm
For local authority / health staff, for example, social workers, care managers, contracts & reviewing officers, Occupational Health Officers, etc
http://northeastcarestandards3.eventbrite.com
10th December: 10am - 12 noon
For adult care providers (regulated & non-regulated)
http://northeastcarestandards4.eventbrite.com
10th December: 2pm - 4pm
For local authority / health staff, for example, social workers, care managers, contracts & reviewing officers, Occupational Health Officers, etc
http://northeastcarestandards5.eventbrite.com
11th December: 10am - 12 noon
For service users & advocates, brokers, carers, advice agencies,
http://northeastcarestandards6.eventbrite.com
Contact Sandra@spsolutions.org.uk if you require further assistance or have any special requirements.
October 30, 2009
Neuro News, October 2009 - News from the Neurological Alliance
Find the latest news from the national Neurological Alliance by using the following link to access the October 2009 newsletter:
October 8, 2009
Northern Neurological Alliance: Notice of inaugural Annual General Meeting
The inaugural AGM of the Northern Neurological Alliance will be held at South Tyneside East Community Fire Station, John Reid Road, South Shields on Wednesday, 25 November
This will be a lunchtime meeting starting at 12:00 noon & finishing no later than 2:00pm
Refreshments & lunch provided, without charge
While your steering group's attention in 2009 has focused primarily on infrastructure issues, to prepare for incorporation &, early next year, registration with the Charities Commission, nevertheless exciting opportunities have been generated
Not least is the contract with the National Health Service South of Tyne & Wear Primary Care Trusts, to improve communications & information delivery to people affected by long-term neurological conditions living in the area or using their services. Also, working with Tees Valley, Durham & North Yorkshire Neurological Alliance, & others, to develop a dynamic Website
Formal notice of the AGM will be issued, electronically to members, shortly. A nomination form will be included for members or representatives of member organisations who may be interested in becoming Directors of the soon-to-be company limited by guarantee
Please, put the date 25 November in your diary. We look forward to seeing you on the day
For those who may be interested but have not yet joined the NNA, our membership pack is attached: Membership_Pack_0908.doc
New members & those who may be interested in joining us, are welcome to come along to the AGM
For further information or enquiries, please contact enquiries@na-na.org.uk
September 29, 2009
Neuro News, September 2009 - News from the Neurological Alliance
The ninth 2009 issue of Neuro News, a monthly bulletin from the national Neurological Alliance, follows, which aims to keep you informed on the activities of the Alliance and of the neurological community more widely.
ALLIANCE NEWS
Neurological Alliance Manifesto
Pursuing the asks of our joint Manifesto has continued to dominate our work in the last month. In July, the Alliance met with David Colin-Thomé, National Director for Primary Care & Long-Term Conditions Lead at the Department of Health (DH) & secured a number of agreements relating to Manifesto asks. We have begun to follow up on the agreements made at that meeting to ensure that they are actioned. We are working closely with Trish O'Gorman at the DH to take this forward & held a meeting with Trish on in August.
The next steps agreed at that meeting include:
• Mapping out the Strategy for NSF implementation
• Developing terms of reference & identifying a Chair for the new NSF Stakeholder Group
• Developing terms of reference for SHA-level Clinical Champions & identifying mechanisms for their appointment & integration into the SHA (Trish will set up a meeting with SHA LTC leads)
• Continuing to promote our submission calling for a CQC Special Review
To see our set of asks & for further information, please visit www.neural.org.uk/campaigning/manifesto
If you want to support or have any queries about this work, please email manifesto@neural.org.uk
Neurological Alliance Policy Group
The second meeting of the Alliance's new Policy Group, chaired by Claire Moonan of the Parkinson's Disease Society, was very well attended. The Group is also increasingly active between meetings & smaller groups are emerging to take forward work on particular issues.
The next meeting is scheduled for 28 October from 1-3pm at our office at the Dana Centre, 165 Queen's Gate, London SW7 5HE. If you would like to attend the next meeting, whether in person or by teleconference, or for more information about the group, please email tahani.saridar@neural.org.uk or call 020 7584 6457.
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 just passed, with great response. The deadline for submission of information for conditions covered in batch 3 is 8 December. 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 email tahani.saridar@neural.org.uk or call 020 7584 6457. The Health A-Z content submission form, containing further information, is attached:
New Members
We are very pleased to welcome the Royal Hospital for Neuro-disability (RHN) & Epilepsy Bereaved as full members of the Alliance & look forward to working with them to identify & achieve our joint aims.
MEMBER ORGANISATION & RELATED NEWS
'Year of Care' to be developed for Parkinson's Disease & Multiple Sclerosis
Neurological Commissioning Support (NCS) is a joint initiative of the MND Association, MS Society & Parkinson's Disease Society. They work alongside Primary Care Trusts (PCTs) & Local Authorities (LAs) to ensure that the needs of people living with long-term neurological conditions are at the heart of commissioning, producing clear recommendations to deliver better outcomes for services in neurology.
NCS has just been awarded funding by BUPA to undertake the work on developing a 'Year of Care' for Parkinson's Disease & Multiple Sclerosis. This is tremendous news & the Neurological Alliance sends its congratulations.
To read, the full story, please visit
www.neural.org.uk/updates/86-Year-of-Care-for-PD-and-MS
Headway booklet wins national award
Headway booklet 'Managing Fatigue after brain injury' has been named BMA Patient Information Resource of the Year in a ceremony at the home of the British Medical Association (BMA) on 8 September 2009. A second Headway booklet, 'Parenting after Brain Injury', was named as a highly-commended runner-up in the same category, marking a hugely successful night for the charity.
The BMA Medical Book Awards is an annual competition that aims to encourage & reward excellence in medical publishing. In 1997, the competition was extended to included patient information materials in order to recognise the production & dissemination of accessible, good quality, accurate & evidence-based patient information leaflets.
To read, the full story, please visit
www.neural.org.uk/updates/85-Headway-booklet-wins-national-award
NEWS
Social Care Green Paper
The Government is currently consulting on radical reforms to the care & support system in England. 'The Big Care Debate' - the consultation on the long-awaited Social Care Green Paper - will run until 13 November 2009. At the heart of the green paper is a proposal to establish a national care service, providing all people with needs above a single England-wide threshold with access to some public funding for their care in older age.
Dan Berry, Head of Policy & Campaigns at the MS Society, is leading all work on the Social Care Green Paper for the Alliance's Policy Group. If your organisation would like to contribute their views, please send them to tahani.saridar@neural.org.uk.
To download the Social Care Green paper, visit http://careandsupport.direct.gov.uk/greenpaper
'Your Health, Your Way...'
Launched last Autumn, 'Your health, your way - a guide to long term conditions & self care' (www.nhs.uk/yourhealth/Pages/Homepage.aspx) sets out the support that patients should expect from the NHS if they choose to self care & brings together existing strands on support in an accessible format.
'Your health, your way' is applicable to all long term conditions & covers five key areas of self care support including information, healthy lifestyle, training, support networks & tools & equipment. It has been designed to help people living with a long term condition take greater control of their health & lives. Primary Care Trusts will have a responsibility to provide locally specific information through NHS Choices & other channels, to empower people to take a more active role in their care & exercise the choices available to them, ultimately improving their quality of life.
This has been supported by a patient information leaflet to raise awareness of self care support choices in 'Your health, your way' & directs people to ask for more information from any health & social care professional involved in their care. To coincide with this, the DH published an information booklet & online additional resources on 'Your health, your way' to support health care professionals.
To see these documents, please visit
www.dh.gov.uk/en/Healthcare/Longtermconditions/yourhealth/index.htm.
Department of Health launches a Consultation on the Proposals for the Framework for Quality Accounts
The DH has launched a public consultation on the proposals for the framework for Quality Accounts & invites public response to their questions.
The proposals stated within the consultation document, are drawn from a series of engagement, testing & other design processes, which have taken place since the vision for Quality Accounts was set out in the DH's 'High Quality Care for All'. The results of this public consultation will be summarised into a report from the DH, which will in turn inform the regulations & guidance for Quality Accounts, ready for their statutory introduction from April 2010. The consultation, runs until Thursday, 10 December.
For more information, visit www.dh.gov.uk/en/Consultations/Liveconsultations/DH_105304
How effective are links?
The DH would like to hear your thoughts on the effectiveness of the current arrangements for supporting links through hosts.
The DH would like to hear your thoughts on the effectiveness of the current arrangements for supporting links through hosts.
The Socialist Health Association is collecting responses. To take part in the survey, visit: www.surveymonkey.com/s.aspx?sm=_2bEAkYhWBfagWk1EcROlcUQ_3d_3d
Results of the previous survey can be found at www.surveymonkey.com/sr.aspx?sm=DDTjfGaOAmUuXR83juQOHjNmaAko4mb45byWGcZfK84_3d
Omega to deliver 'Caring with Confidence' Programme
Carers of people with neurological conditions can benefit from a new programme designed to help them improve their own health & well being & that of the person they care for. 'Caring with Confidence' is a free, national, eight-session programme being delivered in partnership with Shrewsbury-based charity Omega, the National Association for End of Life Care. 'Caring with Confidence' offers support & help to carers, including help accessing the services & benefits available to them as well as practical advice on caring.
Omega can deliver the generic course to all adult carers as well as specialist sessions to carers of people with life-limiting conditions. There are also three sessions dealing specifically with bereavement issues. Omega will provide assistance with transport & alternative care.
For more information on how carers can access the 'Caring with Confidence' programme or if you would like to work with Omega, please phone the Omega Carers' Line on 0845 259 3163 or go to www.caringwithconfidence.net
To read, the full story, please visit www.neural.org.uk/updates/84-Omega-deliver-Caring-with-Confidence-programme
FORTHCOMING EVENTS
'Evolving MS Services'
The MS Society is hosting 'Evolving MS Services', on Friday, 30 October at the Lancaster House Hotel. This event is targeted towards all health & social care professionals who work with people living with MS & aims to promote the multidisciplinary approach to MS care.
Please see the attached programme & booking form for further information: Evolving_MS_Services.pdf
For any enquiries, contact the MS Society Conference Team at conferenceadmin@mssociety.org.uk or call 020 8438 0837/0941
'Living Dangerously': A lecture by Sir Ranulph Fiennes, OBE in aid of Integrated Neurological Services
Integrated Neurological Services (INS) is a local charity, providing professional support & care for those with neurological disabilities & their carers. On Wednesday, 4 November, from 6.30pm to 7.30pm, Sir Ranulph Fiennes, frequently regarded as the world's greatest explorer, will give an illustrated talk about his experiences under extreme conditions, & as leader of many legendary expeditions in INS's aid. Tickets for this event, to take place at Queen Charlotte's Hall, Richmond Adult Community College, Parkshot, Richmond, cost £20 for the lecture only & £30 for the lecture with food & wine to follow. There will be an open bar before the lecture commences.
For any enquiries, please contact INS at admin@ins.org.uk or call 020 8755 4000
ALLIANCE EVENTS
2009 Autumn Regional Neurological Alliance Forum
The 2009 RNA Autumn Forum is to be held on Tuesday, 20 October from 10.30am to 4.30pm at Crowne Plaza Birmingham NEC, Pendigo Way, Birmingham, B40 1PS.
For full details, or for any further enquiries, please contact David Thompson at enquiries@na-na.org.uk
Neurological Alliance AGM & 'Making Brain & Spine Disease Matter' Forum: Tuesday, 24 November
The Alliance is holding its 2009 Annual General Meeting & Forum on 24 November 2009, focused on 'Making Brain & Spine Disease Matter'. The Alliance has had a very busy year: we're keen to tell you all about our local & national campaigning work & we hope to hear your views about how we should work together in 2010. In the afternoon, we are holding a Forum to find new ways to raise the profile of neurological conditions. There will be speakers from the world of marketing & from our government partners, including David Colin-Thomé, the National Clinical Director for Primary Care. The event will be taking place at Dana Centre, 165 Queen's Gate, London SW7 5HE.
Please see the event flyer & booking form attached: Neureological_Alliance_AGM_members_flyer_2009.pdf Members_AGM_Booking_Form_2009.doc
For any enquiries, email tahani.saridar@neural.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.
August 31, 2009
'A mind of information': Neurological Conditions Explained - 4 November 2009
The main voluntary neurological organisation co-ordinators in the region have put together a 'Neurology Information Day' aimed at generic clinical staff.
A booking form & brief details of the event to be held at Middlesbrough Teaching & Learning Centre', on 4 November, follow:
Venue: Middlesbrough Teaching & Learning Centre, Cargo Fleet Lane, Middlesbrough, TS3 8PE
Tel: 01642 242 075
Wednesday 4th November 2009
9:30am - 4:00pm
(Registration 9.30 am - 10.00 am)
Refreshments & a buffet lunch are provided.
For more information & to book your place, contact Jackie Burke, Education & Training Officer NE, Parkinson's Disease Society, by email to: jburke@parkinsons.org.uk, or by post to: PO Box 723, Whitley Bay, NE26 9BP.
The closing date for bookings is 2 October 2009.
BOOKING FORM - JOINT NEURO AWARENESS EVENT
Please reserve ........................... place(s)
Name / job title ............................................................................................
Address ............................................................................................
Contact Telephone Number ......................................................................................
Email ...............................................................................................
Any Special needs / dietary requirements .......................................................
Workshop Preferences:
Please indicate your preference numerically, starting with 1 as your first choice. We will endeavour to give you the choices you have made but this may be subject to change, dependent upon demand.
Workshops:
Aftermath of Brain Injury ......................................
Living with Huntington's Disease ......................................
Living with Motor Neurone Disease ......................................
Living with Multiple Sclerosis .....................................
Living with Parkinson's Disease .....................................
This event is FREE, however a charge of £30 will be made for each delegate place not utilised on the day, to cover food & administration costs.
Neuro News, August 2009 - News from the Neurological Alliance
Here's an edited version of the latest newsletter from national Neurological Alliance:
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). As well as a new address, we have new contact numbers for our London base. These are:
Lucy Brazg, Chief Executive - Tel: 020 7584 0635
Tahani Saridar, Policy and Development Manager - Tel: 020 7584 6457
The Alliance has 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.
Full contact details are also available on the website www.neural.org.uk/contact-us
NEUROLOGICAL ALLIANCE MANIFESTO
Pursuing our Manifesto asks has remained our main focus of work this month. We have continued to engage with relevant stakeholders in achieving concessions to our asks. So far, we have been able to achieve agreement on a number of points, including:
- establishment of a new re-invigorated stakeholder group for the LTNC NSF
- a collaboration on the development of an incisive set of neuro Indicators for Quality Improvement
- identification of clinical champions for the LTNC NSF in each SHA
- in the current absence of a national Clinical Director for LTNC (still our goal!), leadership by David Colin-Thomé & Professor Chris Clough within the DH & the wider NHS.
To see our set of asks and for further information, please visit www.neural.org.uk/campaigning/manifesto.
If you want to support or have any queries about this work, please email manifesto@neural.org.uk
NEUROLOGICAL ALLIANCE POLICY GROUP
The next meeting of the Policy Group is taking place on Tuesday 8 September from 10am to 12pm at our new office at the Dana Centre, 165 Queen's Gate, London SW7 5HE. We want as many of our member organisations as possible to be involved. If you would like more information or your organisation is not already taking part, please email Tahani Saridar at tahani.saridar@neural.org.uk.
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 been set for Thursday 24 September. We are happy to receive case studies for all conditions throughout the length of the review. Please do get involved!
To contribute to this project or for more information, please contact Tahani Saridar at tahani.saridar@neural.org.uk.
REGIONAL ALLIANCE NEWS
NEW PAN-LONDON REGIONAL NEUROLOGICAL ALLIANCE
The aim of the Alliance's Regional Development Project is to establish a network of Regional Neurological Alliances (RNAs) across England, to unite the capacity of our staff & volunteers & provide a credible, authoritative voice for people with neurological conditions & their carers at local level.
We are delighted to announce that The London Neurological Conditions Group has affiliated to the Alliance as an RNA to become The London Neurological Alliance (TLNA). TLNA will act as a resource for the regional staff of our member organisations. It will share information & resources & foster collaborative working across the neuro spectrum. Encompassing 31 PCTs & 33 Local Authorities, TLNA will work to engage commissioners & improve services for all people with a neurological condition & their carers across Greater London.
If you would like to learn more about TLNA, please contact the Chair, Annie Clacey, Headway's London Co-ordinator at london.co-ordinator@headway.org.uk or the Alliance's Regional Development Manager, Nicolette Williams, on 01905 641028 or email nicolette123@o2.co.uk. Please also contact Nicolette if you would like to discuss any other RNAs or the establishment of a new RNA.
MEMBERS & RELATED NEWS
TOURETTES ACTION RECRUITING FOR NEW CHIEF EXECUTIVE
Tourettes Action is looking for a person with strong leadership, business, communications, & marketing skills to run their dynamic ambitious charity. The deadline for application is October 9 2009. If you are interested in applying, or would like more information, please write to Robin Paxton, Chairman, Tourettes Action at Southbank House, Black Prince Road, London SE1 7SJ or email robin.paxton@tourettes-action.org.uk
APPG FOR MUSCULAR DYSTROPHY INQUIRY
On 24 August, the All Party Parliamentary Group for Muscular Dystrophy Inquiry launched the Walton Report. Arising from Muscular Dystrophy Campaign evidence of gaps in care, early deaths & poor support, this Inquiry examined the need for specialist neuromuscular services in the UK. It revealed that life expectancy & quality of life is being seriously affected by a 'postcode lottery' in service provision. In the North East, sufferers can expect to live to 30 whereas elsewhere those with the condition struggled to reach 18. The report concluded by calling for official guidelines to be given to trusts to ensure high standards of care as well as a review of skills in the health workforce. It also recommended that each of the 10 health regions in England & Scotland, Wales & Northern Ireland should appoint a specialist to oversee services.
To read more about the Inquiry, please visit:
www.muscular-dystrophy.org/get_involved/campaigns/our_campaigns/584_all_party_parliamentary_group_inquiry
http://news.bbc.co.uk/1/hi/health/8212461.stm
If you have any further enquiries, please call 020 7803 4839 or email campaigns@muscular-dystrophy.org
CQC SPECIAL REVIEWS
Special reviews & studies are projects that look at themes in health & social care. The CQC board is meeting at the end of October & one of the topics they are considering is a cross-neurological special review. You can express your support for this 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 and studies, please visit:
www.cqc.org.uk//newsandevents/newsstories.cfm?cit_id=34949&FAArea1=customWidgets.content_view_1&usecache=false
NEWS
THIRD SECTOR INVESTMENT PROGRAMME
The arrangements for submission of grant applications under the Innovation Excellence & Service Development Fund 2010-11 have been revised. The Third Sector Investment Programme has made changes to the process for Stage 1 applications as their new on-line system will be implemented later than planned. Organisations making a bid to this programme are asked to complete the Organisation Profile & Application Form, which is available to download using the following link www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_103016. Applications must be emailed to thirdsectorapplications@dh.gsi.gov.uk by 23:59 on Friday 4 September 2009.
If you have any further questions please call 0113 254 5450 or email thirdsectorapplications@dh.gsi.gov.uk.
THE WALTON CENTRE ACHIEVES FOUNDATION TRUST STATUS
On 1 August, the Walton Centre for Neurology & Neurosurgery became known as the Walton Centre NHS Foundation Trust after Monitor, the Foundation Trust regulator, approved their application for this status.
As a Foundation trust, they will have greater freedom to grow & develop services, in response to the needs of the communities they serve. They will also be more accountable to the communities they serve, through their Governors & members.
With this new status, they feel they will truly be at the forefront of the modern NHS. The Neurological Alliance sends congratulations for this fantastic achievement.
HEALTHCARE FOR LONDON'S PROPOSAL TO IMPROVE STROKE & MAJOR TRAUMA SERVICES GIVEN A GREEN LIGHT
On 20 July, a Joint Committee of the Primary Care Trusts (JCPCT) approved plans to radically improve stroke & major trauma services in London. These plans are expected to save around 500 lives a year as well as reduce long term disability. The JCPCT took its decision following a public consultation undertaken by Healthcare for London.
This decision will result in the creation of:
* Eight new hyper-acute stroke units, linked to 24 local stroke units & 24 TIA (transient ischaemic attack or 'mini stroke') units;
* Four new major trauma centres supported by local trauma centres.
DEPARTMENT OF HEALTH PUBLISHES SOCIAL CARE GREEN PAPER
On 14 July, the Department of Health (DH) published its long-awaited green paper on the future funding of adult social care. At its heart is a proposal to establish a national care service, providing all people with needs above a single England-wide threshold with access to some public funding for their care in older age.
The consultation on the green paper - called The Big Care Debate - will run until 13 November 2009. The green paper is due to be followed by a white paper in 2010 but the government does not envisage implementing the plans until 2014, well into the next Parliament, & potentially under a Conservative government.
To download the Social care Green paper, visit http://careandsupport.direct.gov.uk/greenpaper
To read, the full story, please visit www.communitycare.co.uk/Articles/2009/07/15/110185/adult-social-care-green-paper.html
NCPC FREE GUIDANCE AVAILABLE: INVOLVING PATIENTS & CARERS IN END OF LIFE CARE
The National Council for Palliative Care (NCPC) has developed free guidance to assist with involving patients & carers in end of life & palliative care. It is designed as a starting point, giving an approach to user involvement in this area along with practical examples.
Guidance & a practical educational tool are both available at
www.ncpc.org.uk/users/index.html
Presentations from the recent NCPC event about PPI in palliative & end of life care, entitled 'Ask me what I want', are now available on their website. If you are interested in viewing these, please visit www.ncpc.org.uk/events/national.html.
They will be producing further guidance throughout the year & launching a DVD to help people to more effectively engage with seldom heard groups & improve palliative & end of life care.
FORTHCOMING EVENTS
NEUROSUPPORT BENEFIT CONCERT
Neurosupport, the charity that supports people with neurological conditions & their families, is organising a Benefit Concert to raise funding & awareness of their work.
The concert is due to take place at The Cornerstone Campus, Haigh Street (off Upper Islington), Liverpool, L3 8QB on Wednesday 9 September at 8pm & tickets cost £5.00. Several great bands have been lined up: Xander & The Peace Pirates, Johnny & The Jazzmags, & The Blackjackals
If you would like to attend the concert, purchase a raffle ticket or contribute to the event, please contact this event's organiser, Frank Madariaga, Employment & Support Worker for Neurosupport on 0151 298 2999 or email info@neurosupport.org.uk.
PSP & CBD SYMPOSIUM
The PSP Association is holding their 15th Annual Symposium for Health Professionals & Carers on Wednesday 16 September from 9.00am to 4.30pm at the Novotel Centre in Cardiff.
Leading neurologists & health & welfare professionals will speak about the research & symptom management of PSP & CBD.
The subsidised conference price is £35 for Health Care Professionals & includes lunch & refreshments.
For more information & a registration form contact: Deborah Wheeler
The PSP Association, PSP House, 167 Watling Street West, Towcester,
Northants NN12 6BX; T: 01327 322415; F: 01327 322412;
E: deborah.wheeler@pspeur.org
INTERNATIONAL ATAXIA AWARENESS DAY 2009
Ataxia Awareness Day is held on 25 September every year. This year Ataxia UK is asking more people than ever to get involved & help spread the word that ataxia exists.
Recent research commissioned by Ataxia UK showed that just 7% of people know what ataxia is, even though over 10,000 people in the UK have the condition. Ataxia Awareness Day is a chance to change this & tell the world that organisations such as the A-T Society & Ataxia UK are working hard to support people & find treatments & a possible cure for ataxia.
Ataxia UK is organising a number of walks across the country. Anyone is welcome to take part, & information on these events is available at www.neural.org.uk/updates/81-int-ataxia-awareness-day
If you would like to join in at these walks & raise money for the A-T Society, please contact the A-T Society on 01582 760733.
This year Ataxia UK is asking all its Friends to do something to mark Ataxia Awareness Day, however small. To see how else you could get involved, please visit www.ataxia.org.uk/page.builder/ataxiaawarenessday.html.
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. This is an exciting opportunity to develop your knowledge on current research in the neurological sector. 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 & a full programme will follow.
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.
August 2, 2009
Neuro News, July 2009 - News from the Neurological Alliance
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.
October 20, 2008
'After meningitis - Living with the impact of meningitis & meningococcal septicaemia'; 4 March 2009
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.
October 2, 2008
Commissioning Support Service's Self-directed Support Project Stakeholder Event, 12 November 2008
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.
October 1, 2008
Disability North DNEX Exhibition 08, 22 - 23 October
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
September 30, 2008
Equality & Diversity Video - North East Strategic Health Authority
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
August 12, 2008
Northumberland Care Trust's MS Service Users Forum
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)