Recently, I met with Senior Public Affairs Adviser of Motor Neurone Disease Association, Ellen.
Ellen told me about the number of people in UXSR who suffer from MND, and as the local MP, I want to ensure the voices of those diagnosed are heard.
I support the MND Carers campaign, which calls for an increased rate of Carer’s Allowance to a level that reflects the real value of unpaid carers. It also calls for an improvement of career's assessments.
Hillingdon Council holds a record of carers amounting to 5211 people which is positive. However, this is only around 20% of the estimated 25,602 carers in the area. This leaves 80% of carers unknown and without support. That's why I want to work closely as both a Hillingdon Council Councillor, but also local MP, to garner more data on how long carers wait in assessments.
In terms of MND research, I am pleased that in November 2021, the Government committed at least £50 million over a five-year period to MND research. I understand that £35 million of this committed funding has been allocated to specialist research centres so that researchers can access the funding as quickly as possible. The package includes £8 million for early phase clinical research for MND, to speed up innovative new treatments, as well as £1 million for a MND Collaborative Partnership to support the discovery of MND treatments. Remaining funding will be available for researchers to access through the MRC and NIHR.
In February 2023, the then Health Secretary, Steve Barclay, hosted a roundtable for patient groups and leading researchers to discuss their research on MND and explain how this funding can be accessed. As a result, everyone in England can now sign up to take part in MND and wider health research through the NHS App. The increase in research funding will accelerate progress across the UK to find better treatments for MND, giving people living with the condition the chance of a better quality of life.
To find out more about MND Association in UXSR: West London and Middlesex Branch | MND Association. The Branch is ran by dedicated volunteers who provide practical help, information and local support to people with MND and those close to them, whenever they need it and in a number of ways.