SEENA
Home Page Updated: 09 December 2004
Getting the
best from Neurological Services
Welcome to our new Website first
launched on Wednesday 3rd December 2003, so keep visiting this page for further
developments.
This site is for people who
have a neurological condition, their carers and families and for health
professionals working with them.
Content will include:
·
Advice and information
about services or specific neurological conditions.
·
How and where to obtain
help and assistance for people with a neurological condition, their families
and carers.
·
Information and news
about latest developments.
·
A response form to give
us your feedback.
·
Links to other related
organisations and web sites.
25%
ME Group
* The 25% ME Group represents the most severely affected people
with M.E. All have extreme exhaustion
beyond normal fatigue, abiding muscle pain in all limbs and cognitive
difficulties of thinking, memory & concentration.
Some can’t walk or talk at
all, need to be tube fed and intensively cared for, some times in hospital.
* Myalgic Encephalomyelitis is classified, by the World Health
Organisation, as a complex neurological, not a psychiatric, illness. The Chief
Medical Officer reported that its long-term effects on health could be
considered alongside MS and Motor Neurone Disease.
* Lynn Gilderdale, the public face on our poster, courageously and
gracefully manages to retain some of her privacy and all of her dignity in
generously and selflessly representing an estimated 50,000 people in the UK,
who remain largely invisible and isolated because of this dreadfully
debilitating illness.
* The 25% group is always aware of the other 75% less severely
affected M.E. sufferers, to whom some of these recommendations also apply.
Responses
to the 25% Group questionnaire
“Essential services for
severely affected M.E. sufferers”:
|
The 25% ME Group Facts
are: |
The 25% ME Group
Concludes that: |
|
State Benefit
Applications |
|
|
59% turned down first
time, 85% successful on appeal. |
The Benefits system needs
to get it right, first time, to save anxiety. |
|
Social Services |
|
|
Community Care 61% have an inadequate
care package. |
M.E. Sufferers need a
simple procedure and assistance in obtaining suitable care for their
long-term disabling illness. |
|
Homecare Support Over 70% need help with
domestic care, meals/shopping & mobility |
Service providers should
focus on these greatest needs to satisfy basic requirements and supply
mobility aids to reduce social isolation. |
|
Health Services |
|
|
GP Home Visits 91% are insufficiently
attended at home.(53% never; 38% if requested). |
Primary Care GP support Is
vital. Adequately trained multi-disciplinary teams are required for
domiciliary visits and to treat in hospital. |
|
Treatments |
|
|
Over 9% found the two most
recommended treatments - cognitive behaviour therapy and graded exercise
unhelpful. A shocking 82% reported their condition made worse by GET. |
Graded Exercise Treatment
(GET) is inappropriate for all M.E. patients and may make less severely
affected sufferers worse. There is an urgent need for research into the
organic basis of M.E. |
|
Recognition |
|
|
74% rated sympathetic
treatment and acceptance of condition highest of all. |
Recognition and an
understanding of the severity of M.E. is paramount. |
|
Carers |
|
|
87% of Carers did not feel
valued by Society. |
If we don’t look after the
Carers, the Carers can’t
take care of the sufferers! |
Next SEENA
Meeting
SEENA committee meetings take
place each month at the Southend Association of Voluntary Services (SAVS)
Centre.
SAVS Centre 29-31 Alexandra Street,
Southend-on-Sea, SS1 1BW.
Tele: 01702 356000.
Email: mailto:[email protected].
Next meeting: 7th October
2004 2pm to 4pm
NEURO NEWS
From DIANE NEWMAN
Regional Representative for
the Neurological Alliance
Email:
[email protected]
South East Essex
Neurological Alliance (SEENA)
Held its first AGM on 10th June
2004, with guest speaker Judith Kidd, Chief Executive of The Neurological
Alliance.
The newly formed Alliance’s
chairperson, Dr Elizabeth Dowsett is a real driving force behind SEENA’s work.
Launch of the
Neurological Alliance of Scotland
A new alliance of 32
neurological charities was launched on 26th May 2004 and was featured in the MS
magazine MS Scotland. Speaking at the launch was Health Minister Malcolm
Chisholm who announced that neurological patients in Scotland are to benefit
from a £3million redesign in services.
Forthcoming
Events
Buckinghamshire
Neurological Alliance
PO Box 499, Amersham HP6 5XR
Tel: 01494 729373.
E-mail [email protected]
Hosts the next Regional
Forum’s meeting on Thursday, 7th October 2004.
Lincolnshire Neurological
Alliance
Next meeting Friday 24th
September 2004.
10.30 a.m. to 12.30 p.m. At
St Barnabas Hospice Day and Educational Centre, Hawthorne Road, Lincoln.
www.lincolnshire-neurological-alliance.org.uk
West Berkshire
Neurological Alliance
AGM Thursday 30th September
at 7.30 pm. Guest Speaker: The Neurological Alliance Chief Executive, Judith
Kidd.
Thurs 21st April 2005
All day Neurological
Conference at Newbury Racecourse. Keynote speakers Professor Ray Talliss and 8
other speakers. Educational Credits. &120 for professionals. Concessions
available. Contact John Holt on 01635 33582.
The Neurological Alliance
Co
Ltd by Guarantee No 2939840
Registered Charity number
1039034
Southbank House, Black
Prince Road,
London SE1 7SJ 020 7463 2074
Www.neural.org.uk.
AGM 4th November 2004 at The
Rose Room at MS National Centre, Cricklewood, NW2.
Would you like to set up a
regional alliance? We can use your skills and enthusiasm. E-mail
[email protected]
OTHER REGIONAL
ALLIANCES
Caithness and North
Sunderland Neurological Group
Cambridgeshire Neurological
Alliance
Glasgow Alliance of
Neurological Groups
Greater Manchester
Neurological Alliance
Mersey Neurological Alliance
Leicestershire Neurological
Special Interest Group
Morecambe Bay Neurological
Alliance
Sandwell Neurological
Alliance
Wales Neurological Alliance
Web Links
CHARMS
www.charms.fsnet.co.uk
DIAL UK
Serving the Disability Advice Network
www.dialuk.info/
South Essex Partnership
NHS Trust
www.southessex-trust.nhs.uk
The Motor Neurone Disease
(MND) Association
www.mndassociation.org
South Essex Branch
www.mndsessex.freeuk.com
Click here to obtain
further information.