Calum Ferguson explains why NHS Scotland should adopt NICE guidelines on MND care and ensure the condition is treated as a priority
I’ve been living with Motor Neurone Disease (MND) since March 2010 and I’ve been working with MND Scotland on its Holyrood 2016 manifesto for people with MND. The manifesto was published in March 2016 and was produced in consultation with people affected by MND.
MND Scotland is calling on all political parties to support its manifesto and already more than 100 prospective MSPs from across all parties have signed a pledge to support it.
It calls for politicians to prioritise research into MND, ensure the needs of those affected by MND are met now, support carers and alleviate the financial burden of MND.
MND care is a postcode lottery and while mine is coordinated by a multidisciplinary team, many people with MND are left isolated and their care is less than ideal
Calum Ferguson
At the end of February 2016 the National Institute for Clinical Excellence (NICE) published their long awaited guidelines on MND. These guidelines aim to improve and standardise care for people who have MND across England, Wales and Northern Ireland. I’m pushing for NHS Scotland also to adopt these guidelines, as this would significantly improve both care and equipment provision for MND patients across Scotland.
As a result of MND I have suffered from muscle weakness, wasting, cramps and problems with speech, swallowing and breathing. Although I am fortunate to still be living six years after my diagnosis most people with MND die within two years of developing symptoms.
Since there is currently no cure for MND, the aim of my care is to enable me and my family to live as full a life as possible. MND care is a postcode lottery and while mine is coordinated by a multidisciplinary team, many people with MND are left isolated and their care is less than ideal.
The NICE guidelines include recommendations that cover the care of people with MND from diagnosis until preparation for end-of-life to help improve and standardise assessment and management of the disease.
The particular areas which have been enhanced in the guidelines are care requirements, family carer support, non-invasive ventilation (NIV), cognitive support, physiotherapy and dietary advice.
Sally Light, chief executive of the Motor Neurone Disease Association (MNDA), said: "The MNDA strongly welcomes the publication of the NICE guidelines on MND. This long awaited guideline has come about after more than four years of campaigning by the association and our supporters.
“It is a hugely significant document that sets out in detail what good care looks like and how it should be delivered. It will shape future care and have a huge influence over the quality of life for people living with MND and their families and carers."
I strongly believe that if NHS Scotland adopted the NICE guidelines, together with the combined resources of MND Scotland and The Euan McDonald Centre, we would be well placed to demonstrate to the rest of the world what can be achieved in the management of MND, as well as playing our part in the search for a cure.
Calum Ferguson is an MND campaigner. You can support his fundraising for MND Scotland at the Just Giving page or text CALC51 £5 to 70070.
