PATIENTS in Wales who suffer from muscle-wasting diseases like muscular dystrophy are being let down by GPs who know “nothing” about their condition, a charity has claimed.
More than 3,000 people in Wales have some form of muscular dystrophy, a term for a group of conditions in which the muscles or the nerves which control the muscles are affected, often leading to disability.
In a survey of 2,000 muscle disease patients across the UK published by the Muscular Dystrophy Campaign, 64% of patients in Wales said they felt GPs had a poor understanding of their condition and half said they had been misdiagnosed or had waited years for a diagnosis.
Other health professionals fared worse than GPs, with 74% of patients saying they felt they do not “know enough” about their condition.
The treatment available to patients in Wales was equally poor, with 91% of patients saying they had no access to hydrotherapy and a further 71% saying they could not get physiotherapy.
The Muscular Dystrophy Campaign argues these two treatments are often the only effective way of keeping patients’ muscles working for longer.
Many of the patients who responded 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.
Linda Slocombe, 53, of Pontypridd, has mitochondrial myopathy, which can cause muscle weakness, muscle cramping, fatigue, lack of endurance and poor balance.
She said: “I’ve put up with years of doctors, even at consultant level, telling me I’m putting it on or making it up. One of them even called me a lazy hypochondriac.
“I don’t even bother my doctor now because he knows nothing about my condition. Even my consultant doesn’t seem to understand what I’m living with.”
The Muscular Dystrophy Campaign’s acting chief executive Robert Meadowcroft said: “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 almost £4m a year is being wasted in Wales 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.”
The survey highlighted the lack of specialist muscle disease care advisers in Wales – regarded as vital for anyone with a muscle-wasting condition as they provide advice and support on care, specialist equipment and grants.
In May, the Assembly Government announced it would be appointing three care advisers, a move hailed by the charity as a “huge step forward”.
An Assembly Government spokesman said: “Work is underway to improve services for people with muscular dystrophy.
“Health boards are appointing three care advisers – one for North Wales, one for South-East Wales and one for Mid and West Wales. They will be appointed in the autumn.
“They will have the knowledge of services available to provide help and support to individuals and their families.
“Better ongoing care and support at home arranged by the care advisers should reduce emergency hospital admissions.
“The work on implementing plans for adult neurosciences and the paediatric neuroscience standards will also deliver significant improvements in the health and quality of life for people with muscular dystrophy.”
source: walesonline.co.uk
No comments:
Post a Comment