Nowhere to turn for North West muscle disease patients

HEALTH professionals in the North West often know nothing about devastating muscle-wasting conditions according to a charity survey they have just published.

The Muscular Dystrophy Campaign has published 'State of the Nation', a national survey of 2,000 muscle disease patients and their carers with almost 650 respondents. Patients told us of their experiences of muscle disease healthcare in the North West, which included:-

► 54% of muscle disease patients in the region feel their GP does not have a good understanding of their condition, and 74% feel other health professionals don’t either;

► Almost half of patients were given the wrong diagnosis, or had to wait many years for a diagnosis;

► 96% of patients have no access to hydrotherapy and 80% have no access to physiotherapy, often the only effective treatments to keep muscles working for longer;

► 78 percent of patients have no access to a specialist muscle disease care advisor, who co-ordinates all aspects of healthcare.

Diane O’Connor is from Prescot in Merseyside and has FSH muscular dystrophy, which causes the muscles in her face, arms and legs to waste. She said:- “I was told by one doctor I spoke to that I couldn’t have muscular dystrophy because I wasn’t a boy. Another hospital consultant that I saw about something else told me, ‘most models you see on the catwalk have muscular dystrophy. That’s why they walk with such sad faces and their arms at a funny angle.   The level of ignorance about muscle disease from a lot of health professionals is unbelievable. I also have cancer and I was even asked by one doctor if I thought I had cancer because of my muscle disease symptoms. My own GP admits what he knows about my condition could be written on the back of a postage stamp, but at least he’s willing to learn.”

Many of the patients who responded are concerned about the Government’s proposals for GP commissioning of specialised health services because they feel their GP knows so little about muscle disease that they would be unable to give useful advice or make a referral to a specialist consultant.  Others said their condition had been passed down through generations of their family because they had not received a diagnosis in time or had not been advised that the condition could be passed on genetically.

The Muscular Dystrophy Campaign are warning that to put GPs in charge of healthcare for these complex conditions could result in patients missing out on important treatment that could improve, and in some cases even extend, lives. Muscle disease patients have already struggled with a slow diagnosis process and poor healthcare, and are concerned this could become even worse if the GP commissioning reforms go ahead.

The Muscular Dystrophy Campaign’s acting chief executive Robert Meadowcroft said:- “The experiences our patients have told us of when visiting their GPs have confirmed for us how disastrous a move to GP commissioning could be. Neuromuscular services have been neglected for years and this could make the situation even worse. It is unacceptable that a patient should be delivered such a devastating diagnosis and then not offered the best possible care and advice straight away, or in some cases not given a definite diagnosis at all.   We estimate that at the moment more than £9 million a year is being wasted in the North West on unplanned emergency admissions to hospital for muscle disease patients. A significant proportion of this could be saved by investing in specialist services earlier on which could avoid patients reaching this crisis point.”

To find out more about the work of the Muscular Dystrophy Campaign go to:- muscular-dystrophy.org.

The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle disease. It has pioneered the search for treatments and cures for over 50 years, and is dedicated to improving the lives of all children and adults affected by muscle disease.  It funds world-class research to find effective treatments and cures; provides free practical and emotional support; campaigns to raise awareness and bring about change and awards grants towards the cost of specialist equipment, such as powered wheelchairs.

BUPA WANTS TALENT!

“It’s never too late” is the call from Bupa care home residents across Merseyside, who have set out to prove the older generation still has what it takes.

In a bid to find the region’s stars, the local care home residents are organising a series of special mini talent shows aimed at older people, and are encouraging their local communities to get in touch, join in or come and enjoy the entertainment on offer.

The ‘Bupa Wants Talent’ shows are part of plans to mark UK Older People’s Day on 1 October 2010, a national day of events that celebrate later life and the huge contribution older people make to society.

Siobhan Drane, Bupa Care Homes’ community affairs consultant, said:- “Age is no barrier when it comes to having star quality and we want to hear from anyone who wants to take centre stage and grab their share of the limelight.    Last year, we had people in their 80s and 90s belting out old time classics, performing magic acts, telling jokes and there was even a 102 year old who stole the show with a poetry recital. This is a great chance to shine whilst having a bit of fun and is a fantastic showcase of the talents of older people.”

‘Bupa Wants Talent’ is now in its 2nd year, with The Zimmers, the world-famous band of pensioners, helping with the launch. Regularly challenging the preconceptions about getting older, the band has a combined age of over 3,000 and aims to actively celebrate old age.

The local talent shows will be staged in Bupa’s care homes across the UK between Monday, 27 September and Saturday, 2 October 2010, where the winners of each local show will be presented with a special ‘Bupa Wants Talent’ award.

Siobhan continued:- “It’s time to prove that it’s never too late when it comes to having talent. Acts of all ages are welcome to join us and take part, but we’ll certainly be on the look out for anyone who thinks their performing days are over and wants to dust off their old props, dig out their favourite childhood jokes and impress our judges. Watch out Simon Cowell!”

Anyone wanting to find out more information, or to register their interest in taking part in a local ‘Bupa Wants Talent’ show, should call:- 0845 600 4622, email:- talent@bupa.com or write to:- Bupa Wants Talent, Bupa, Bridge House, Outwood Lane, Leeds, LS18 4UP.

Entries must be received by Monday, 13 September 2010 - simply provide your name, contact details and your chosen talent and Bupa will be in touch with further details.  For more information, visit:- bupa.co.uk/care-homes.