A charity is concerned about the shortage of specialist nurses for people in Yorkshire with rare muscle weakening conditions.
Myaware, which is the new name for the Myasthenia Gravis Association, has just carried out a survey among members which has revealed more than half of those surveyed have no access to a specialist nurse at all despite needing one. A third of people also struggle to contact their consultant. The charity is campaigning to change this.
Myasthenia Gravis is an autoimmune condition. Antibodies which normally fight infections go wrong and attack the communication system between the brain and the movement muscles. This makes sufferers feel weak.
Each nurse costs £35,000 per year. As well as lobbying government the charity is fundraising to pay for nurses in as many regions as possible.
Myaware Chief Executive Officer, Ruth Ingledew, said: “The secret to living with myasthenia is managing it properly and patients need ongoing specialist support to empower them to do that. Neurologists who specialise in myasthenia will tell you how absolutely crucial it is to have one specialist contact rather than a succession of different people giving conflicting advice. A quarter of our members told us they really needed a myasthenia nurse last year and there wasn’t one available in their area. This needs to change. Apart from anything else a myasthenia nurse can help to avoid episodes escalating resulting in unnecessary hospital visits.”
The survey revealed that a third of respondents were admitted to hospital at least once in the past 12 months and that, when being treated for something other than myasthenia, half of those did not see a neurologist or feel that medical staff understood their condition. Failure to take myasthenia into account can lead to complications with standard medical procedures such as anaesthesia and potential problems with drug interactions.
Ruth said: “It can be quite daunting for somebody with myasthenia to feel that their condition is not well understood in a hospital setting. This is something we are really working upon.
We encourage our members to carry cards to give to medical professionals explaining the main issues but really we want this knowledge to already be in place and to have myasthenia nurses in the hospital to liaise between patients and staff.”
The charity also wants to promote better understanding of the condition among medical professionals. Nearly two thirds of people also said that health and social care professionals rarely asked them what was important when managing their condition.
Ruth said: “Personalised care centred on the needs and wishes of the patient is a high priority for the NHS and we want to make sure that our members are experiencing this on the
The charity has a section on their website aimed at medical professionals. This explains some of the challenges when treating myasthenia. If you would like to find out more about the condition or would like to sponsor a myasthenia nurse in your area please go to www.myaware.org