News Updates

The South West Disability Show 2008
Westpoint Centre Exeter
Friday 6th and Saturday 7th June 2008
Open daily from 10am to 5pm
Free Entry and Free Parking

You can turn up on the day or register in advance on www.southwestdisabilityshow.co.uk to be entered into a free prize draw.

The South West Disability Show is the region’s largest event to focus on promoting independent living and mobility for people with all forms of disability. The show is aimed at end-users, their families and carers, as well as the professionals who help facilitate the everyday lives of those with disabilities. The show presents an ideal opportunity to see, touch and compare the latest products, services and initiatives. Visitors can try out the latest home aids and equipment, get advice from professional bodies, test drive vehicles, check out the latest leisure facilities, clothing and accessories.

For further information visit the show website www.southwestdisabilityshow.co.uk or contact Pat or Alyson on 01789 840999.

Podcast of Neuromuscular Conference

You might have read the feature on the MDC website about the Neuromuscular Conference, but for those who might have missed the news – they have just completed the production of their first ever podcast fresh from this meeting.

The podcast is about this International Neuromuscular Conference that was organised by the charity in partnership with the new MRC Centre for Neuromuscular Diseases and took place on 1-2 February at the UCL Institute of Child Health. It was done in collaboration with the Department of Science Communication at Imperial College and the major work was done by Neil Strawson who had just finished his studies. It includes interviews from leading figures in the MRC Centre as well as from scientists that the Muscular Dystrophy Campaign currently supports.

Those who attended the conference are well aware of the new centre - however, the podcast is certainly worth listening to - it will not only provide a great summary about the aims of the MRC Centre, it also gives a pretty good idea about the impact of the MDC research program and the funding provided.

Podcast

The MDC is running a campaign re access to physio,
including a Parliementary lobby on May 14th.

To support this they'd like to know more about what access people with MD get to physio on the NHS, and are particularly interested where people are told their PCT won't pay for people over 60, or the physio service only does short term treatements etc.

If you'd like to complete this form and return to Nic Bungay that would be really helpful.

Patient Physio Survey

Please also sign the petition to be presented to Number 10 on the day of the lobby on the 14th May. The more names behind our campaign for a national neuromuscular service the better!

Petition to Number 10

If you're also interested in attending the lobby on 14th May please let me know, as Nic has asked for suggestions/nominations from the FSH group.

Many thanks
Sheila Hawkins

Making Every Disabled Child Matter
New campaign workshops for parents

Click Here for details.

MDC Lobby in Wales - Media Coverage

Click Here to read.

LEND US YOUR EARS
A UNIQUE COMPILATION OF SONGS ABOUT LIFE
From Angryfish Records

A fantastic invigorating and emotional collection of songs that stare through the windows of our souls and shout back at you with liberation.

Lend Us Your Ears is a 17 track compilation of contemporary original music, assembled with the purpose of promoting the breadth and depth of underground creative musical talent among the United Kingdom’s collective of Disabled Artists.

There are ten artists on the recording: Angryfish, Luke Lundin, Mat Fraser, Julie McNamara, Casa Jay, Clair Lewis, Jack Fletcher, Parafernalia, Jon Turner, Lindsay Carter.

Album available from Angryfish Records, 33 Bickley Grove, Sheldon, Birmingham B26 3DJ. £10 including Post & Packaging or £15 with T Shirt (UK delivery). For multiple purchases or overseas buyers contact Angryfish Records.

Sample the opening track 'One More' at www.myspace.com/therealangryfish

Do you believe that doctors and the NHS should do more to improve the quality of life of patients and people with a disability? If you do, one problem is that the medical profession, managers, civil servants and politicians cannot always be expected to know what you (and everyone else) mean when you use the phrase ‘quality of life’.

To help overcome this problem, we would like to invite the members of your organisation to give their viewpoints on the subject of their quality of life to a study taking place in England and Wales.

The QALYity Project (an alliance of prestigious patient groups, medical professionals, academics, and journalists) is conducting the study in order to develop an index that can measure how effective each individual medical treatment or form of care/ support is at improving the quality of life of people with a long-term medical condition (or a disability)—as determined by the individuals themselves, not by clinicians. The results of the survey, and the tools that emerge from it, will be made publicly available, will be submitted for peer review, and will also be presented to the National Institute of Health and Clinical Excellence (NICE), the government-funded body that decides which treatments and care should be paid for by the NHS [for more about the QALYity project: www.patient-view.com/qalyity.htm]

A December 2006 QALYity Project survey collected the views of over 270 patient/disability/carer organisations throughout England and Wales. These groups have kindly provided a wealth of potential definitions of the phrase ‘quality of life’ [results of the December 2006 quality-of-life survey can be read at the above web address]. But people are different, and not all of the December 2006 definitions are likely to apply to everyone. This second questionnaire aimed at your members should allow these individual differences to be collated.

We would be most grateful if you could give your members a chance to input their opinions to this survey on their quality of life (the short questionnaire can be filled out online by clicking on the following weblink: QUALITY OF LIFE SURVEY FOR PATIENTS.

The administration costs of this survey are being supported by an educational grant from NovoNordisk.

Signed on behalf of the QALYity Project,
Alexandra Wyke, CEO, PatientView
and Simon Williams, Together4Health

For general enquiries about this study, please feel free to contact Dr Wyke at:
Woodhouse Place, Upper Woodhouse, Knighton, Powys, LD7 1NG, Wales
Tel: 0044-(0)1547-520-965; Email: info@patient-view.com

For more information: www.patient-view.com

For more about the QALYity Project see www.patient-view.com/qalyity.htm

Motability

A new DVD has been released to help raise awareness about the Motability Scheme. The DVD, fronted by actress and disability rights campaigner, Julie Fernandez, helps bring the Scheme to life. It will be useful in informing health professionals, advisory groups, social services and other charities and organisations about the help that is available through Motability, for disabled people and their families.