Jennifer Bedford Head of Partnerships at the MND Association.
Six people per day in the UK are diagnosed with motor neurone disease (MND). MND is a rapidly progressive and terminal disease that attacks the motor neurones, or nerves, in the brain and spinal cord1. It can leave people locked in a failing body, unable to move, talk and eventually breathe. It affects people from all communities and a person’s lifetime risk of developing MND is around 1 in 300. It kills a third of people within a year and more than half within two years of diagnosis. There is, currently, no cure for MND and whilst research into one continues, other research and therapeutic efforts are firmly focused on managing symptoms and maximising the quality of life for people living with it.
People living with MND, in keeping with all those with complex care needs, receive health and social care services from multiple providers and in different care settings. Good, person-centred care is based on the needs of the individual. Such care transitions between providers, for example GP, specialist clinics, hospital, and community provision in the home. GPs are essential to the effective care of people living with MND – they are often the service to which people turn, as they are visible and trusted within the community. Furthermore it is possible to instigate an appointment with them.
The MND Association recognise the importance of the GP role, and its position within the primary care team. The Association resource ‘Motor neurone disease – a guide for GPs and primary care teams’ was developed with this in mind. This comprehensive guide is endorsed by the Royal College of General Practitioners, and provides information about all aspects of MND:
• Diagnosis of MND
• Incidence and prevalence of MND
• Management of MND
• Cognitive change and management
• Psychological support
• Palliative care
• Advance care planning
• End of life
• Supporting families and carers
“I was truly impressed by this document as it is comprehensive, informative and in my opinion extremely useful”
Nassif Mansour, GPSI Adult Medicine, Neurology and Community Rehabilitation, Clinical Lead for Neurology – Kingston Clinical Commissioning Group, Chair of the Primary care and Community Neurology Society.
GPs that have used the guide recommend it was well written and useful to have available in practices as a reference. ‘This is a really good guide as it is focused, clear, up to date, practical, relevant to the GP and easy to read or refer to later. It is also a handy reference for other medical conditions, which lead to similar management issues.’
You can find an electronic copy of ‘Motor neurone disease – a guide for GPs and primary care teams’ on the Association website in the information for GPs section here.
A previous article on the MND NICE guideline can be accessed from here.
You can also order hard copies of the booklet from the Connect Helpline by calling 0800 802 6262 or emailing firstname.lastname@example.org.
For further support there are also 2 accredited online modules on the RCGP CPD website which are highly recommended and may be found here.
The MND Association supports professionals to care for people affected by MND in a variety of ways, which includes providing:
• a range of information and educational opportunities
• local support and advice from staff and volunteers.
Please do visit our website www.mndassociation.org to find out more about MND and our services.
1 Bäumer D, Talbot K and Turner MR. Advances in motor neurone disease. Journal of the Royal Society of Medicine. 2014; 107:14.