Dave Thompson MSP

MSP for the Highlands and Islands, Dave Thompson, has joined desperate families in their fight for life-prolonging healthcare for muscle disease.

Muscle disease patients and MSPs published an alarming report at Holyrood yesterday, criticising the poor health services which often shortens the life-expectancy of babies, children and adults with muscle wasting diseases.

The Mackie Report is the culmination of five months of work by MSPs from the Cross Party Group on Muscular Dystrophy (CPG) and people across Scotland living with muscle disease who shared their experiences with the CPG.

It is the first time an in-depth investigation into the care and social services offered to Scottish muscle disease patients has been carried out. It found that:

• The whole of Scotland is served by just two care advisors who are half funded by charity. These are vital roles in offering support and advice to patients and families, and can help guide them through the maze of care and benefits;
  
• Muscle disease patients in Scotland have a patchy and sometimes non-existent level of service from diagnosis onwards;
  
• There is an alarming reduction in services for patients moving from paediatric to adult care.

The Mackie Report was launched at a reception at Holyrood yesterday attended by MSPs, patients and families, and Muscular Dystrophy Campaign Acting Chief Executive Robert Meadowcroft.

Talking about the report, MSP Dave Thompson, who met constituent Richard Wood, from Cannich, at the event, said:

"I am delighted to support these patients and families in their ongoing fight for better health services. You can only imagine how hard it is for families when they find out their loved-ones have these conditions, then to be forced to battle for the healthcare they deserve is simply unacceptable."

Eilean Stewart gave evidence of her terrible diagnosis experiences to the Mackie Report. She is 20, has limb girdle muscular dystrophy and is from Glasgow. She said:

"It took nine years for me to be diagnosed with limb girdle muscular dystrophy, which was a hard time as I was growing up. I couldn't even put a name to why I couldn't climb stairs and do sports. It was a horrible diagnosis process. I was put on steroids when I shouldn't have been which made me gain weight and led to bullying at school. That was a really hard time and psychologically really harmful. It didn't make me stronger."

One of the guests at tonight's reception will be River City star and long-time Muscular Dystrophy Campaign supporter Eileen McCallum, whose two young grandsons have the life-limiting muscle-wasting disease Duchenne muscular dystrophy. Earlier this year she recorded a documentary about the much better level of care patients in Denmark get compared to the UK.

Eileen McCallum said: "In Denmark, as soon as a diagnosis was made for a little boy the same age as my grandson, a health representative was assigned to them, took care of everything and there were no arguments with the council as there are here in the UK. We had such a struggle sorting out our home adaptations and the help given was so grudging as if it was unnecessary."

The report was named after Reg Mackie, one of the Muscular Dystrophy Campaign's most dedicated supporters over the last 50 years whose son died of muscular dystrophy in 1970. The Mackie Report recognises his selfless commitment to helping the charity and those affected by muscle disease. Reg was a founding member of the Muscular Dystrophy Campaign and has been chair of the charity's Scottish Council and vice chair of the Muscular Dystrophy Campaign.

Lord Attenborough, who is an honorary life president of the Muscular Dystrophy Campaign, wrote the following words to Reg in 1979:

"Your family has been an inspiration to many of us over the years. While people such as yourself continue to serve the group with such loving devotion, I am certain that not only is our future safe, but that ultimately we must achieve our objectives."

The Mackie Report makes the following recommendations for improving Scottish muscle disease care:

• NHS Scotland and the Scottish Government should work together with the Muscular Dystrophy Campaign to improve and invest in muscle disease services, and all patients should be offered the same treatments;
  
• The care advisor posts should be funded by NHS Scotland and more care advisors should be recruited;
  
• Services need to be more integrated to give better support to patients for all aspects of care, treatment and financial advice;
  
• The transition from child to adult services needs to be improved with the help of new transition workers, so that patients can expect a similar level of care;
  
• Health professionals should have a better understanding of muscle disease and there should be succession planning in place for specialists leaving or retiring.

The Muscular Dystrophy Campaign and its Scottish Council will now be working with health bosses and MSPs in Scotland to start to improve care and services for the 5,500 people living with muscle disease in Scotland.

To find out more about the work of the Muscular Dystrophy Campaign go to www.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.

Notes:

• More than 70,000 babies, children and adults in the UK have muscular dystrophy or a related condition. A further 350,000 people are affected indirectly as family, friends or carers.
• Muscle diseases cause muscles to waste and weaken making it hard for those affected to do even the simplest of tasks. The conditions don't just affect the muscles in the arms and legs but the heart and respiratory muscles too. There are no cures and many affected children don't live to reach adulthood.