Families in Leicester living with muscle-wasting conditions have spoken out about the major gaps in vital specialist NHS advice and support they face and are calling for greater help for the hundreds of children and adults in the area who are affected.
Around 5,000 people across the East Midlands are affected by muscular dystrophy or a related neuromuscular condition, yet just one Derby-based Neuromuscular Care Advisor is available to provide specialist practical and emotional support for families for the whole region.
While the NHS announced funding for two additional neuromuscular care advisors for Leicester and Nottingham earlier this year, recruitment for the posts is yet to begin.
Backed by the Muscular Dystrophy Campaign, they are urging NHS decision-makers to recruit for these posts without delay.
The Muscular Dystrophy Campaign is arguing that millions could be cut from the annual £5.8million bill for unplanned emergency admissions to hospital for people in East Midlands with the conditions through better investment in specialist care and equipment.
Judith Wellby from Hinckley in Leicestershire, has Charcot-Marie-Tooth (CMT) and she said:
I was diagnosed CMT type 2, two years ago. I struggled to cope with the diagnosis on my own and felt like I had nowhere to turn. Someone with knowledge and understanding of my condition, needs and how or where to access local services, would make a huge difference and be a big support. The internet does not speak to you, or answer personal questions. At the moment, I have to relay information about my condition, explaining what it is and how it affects me to every health professional I meet. It can be terribly isolating have a condition that people know little about.
People affected by muscle-wasting conditions in Leicester, including children and teenagers, are just not getting enough support to manage their health. No one wins in this situation - people with muscle-wasting conditions face an ongoing battle to keep healthy and mobile. The less mobile you are, the more general health problems you can develop, which means the more dependent on social services and NHS you become.
Sheila Hawkins from Leicester has Facioscapulohumeral muscular dystrophy (FSH). She said:
Having to navigate the health system and negotiate all the NHS services can be extremely frustrating. Having someone there, who has knowledge of my condition and is able to help with problems, health-related and otherwise, would help enormously.
I've had real problems where a treatment for another condition has impacted badly on my health, usually by confining me to bed and limiting my mobility. It would be really useful to be able to call in a care advisor who worked for the same trust to advise health care professionals, who have no previous knowledge of my condition, on how to best manage my recovery.
Nic Bungay, Director of Campaigns, Care and Information at the Muscular Dystrophy Campaign, said:
Care Advisors can have a major impact on the health and wellbeing of patients and their families, providing the vital support, help and advice that they need to stay as healthy as possible. Preventative care and support improves quality of life for patients and keeps them out of hospital. Whilst it is encouraging that the NHS has committed to funding these roles, we now need to see these changes made on the ground. These posts could make a huge difference for the 5,000 patients and families affected by muscular dystrophy and related neuromuscular conditions in the East Midlands who currently only have the support of one care advisor.
For more information about the campaign for improved access to specialist neuromuscular care in Leicestershire and the East Midlands, get in touch on 020 7803 2865 or by email at firstname.lastname@example.org