Investment needed to ensure care reaches all who need it

WITH reference to your article about access to drugs to save children (Yorkshire Post, April 24), as Chair of the All Party Parliamentary Group for Muscular Dystrophy, hearing local father Mark Creswick’s powerful account in Westminster of how potentially lifesaving treatments may never reach his son Harley owing to worrying gaps in specialist care in the region, drove home an overwhelming sense of urgency for the NHS to act now to improve standards of care for people with muscle-wasting conditions.

The lack of investment in specialist neuromuscular care in some areas of England could hold up – or even stop – successful treatments from reaching vulnerable children and young people.

The extent of the gaps in specialist care across the country has been highlighted in the Muscular Dystrophy’s Campaign’s State of the Nation report earlier this year. The report reveals that investment in the provision of comprehensive specialist care could avoid millions of pounds being spent when people with muscle-wasting conditions are admitted to hospital emergency wards.

The charity estimates that £7m is being spent each year on unplanned hospital admissions for people with these conditions in Yorkshire and Humberside – and that £2.8m could be saved through investing a relatively small amount on better care.

Potential treatments which may help to slow the progression of Duchenne muscular dystrophy are now on the horizon. Young men with Duchenne muscular dystrophy do not have the luxury of time. Depending on what care and support is available to these young men, they may live to their teens or into their forties. The NHS must ensure that all patients have equal and consistent access to specialist care before any potential treatments become available, or risk families enduring agonising delays before they can expect to benefit from any new treatments, or even not benefit from them at all.

From: Mike Padgham, Chairman, Independent Care Group (York and North Yorkshire), Eastfield, Scarborough.

VANESSA Redgrave’s dramatic monologue on the state of the country’s care homes does little to help anyone – least of all those receiving care.

To make the claim that the lives of people in care homes is abominable shows a clear lack of knowledge.

While not wishing to claim that all care homes are perfect, the vast majority work extremely hard to care for people with compassion, dignity and a desire to offer the best possible quality of life.

For many families, the decision to find a care home for a loved one is an extremely difficult one but is nevertheless a decision that often has to be taken because that relative needs the expert, professional care on offer.

History is littered with families who have tried to provide care for a parent and been torn apart by that effort. As a care home owner, I wouldn’t publicly suggest any shortcomings of the theatrical profession.

Instead of making sweeping, damaging generalisations, Vanessa should be turning her fire on successive governments and local authorities that have failed to properly fund social care in this country.

She should be singing the praises of carers who do a fantastic job, often in very challenging circumstances, for very little reward and even less recognition and perhaps she should visit some to see the great job they do.

From: M Hellawell, Cross Lane, Scarborough.

WITH reference to the children’s heart surgery saga in Leeds, I don’t know why Maxwell Laurie thinks heart surgery should be stopped in Leeds and treatment transferred to Newcastle (Yorkshire Post, April 23), nor should it be called ‘arrogant stupidity’ to fight to retain it in Leeds.

On the contrary, what has emerged is a lot of conspiracy and twisting of facts by certain people, attempting at any cost to close down the Leeds centre.

In case Maxwell Laurie isn’t aware, Leeds sits in the centre of the biggest population conurbation outside London. The centre for heart surgery has a very high reputation. We in Yorkshire want it to stay because fears of the long distance to other areas on very busy roads could be fatal for some cases. It also means difficulties for other families with children and limited means, who will not be able to travel long distances.

The NHS should not be 
trying even to cut down centres when the birth population is rocketing. Newcastle should be able to continue operating as it always has.