Tanya Curry is the CEO of the MND Association
As the Conservative leadership contest gets underway, the motor neurone disease (MND) community is watching proceedings with interest.
MND is a progressive, terminal neurological disease that has a devastating impact on those it affects and kills There is no cure, and treatment options are currently extremely limited. Around 5,000 people in the UK live with the condition at any one time.
As the new government gets to grips with the country’s challenges, its approach to key issues, from the housing crisis to the reform of health and social care services, will have critical implications for the MND community. The leader of the opposition has a key role to play in holding the new government to account, and we hope that the successful candidate will ensure that the needs of those living with this terrible disease are given the consideration that they deserve.
The challenges facing the social care system received little attention during the general election campaign, but they can no longer be ignored. There has been a broad cross-party consensus around the shape of social care reform since the Dilnot Commission published its recommendations in 2011.
Political difficulties have stymied successive governments’ attempts to take them forward, like when Theresa May was forced to scrap her manifesto commitment in 2017. Rishi Sunak attempted to revive the core of the proposals but delayed their implementation indefinitely, and following Rachel Reeves’ announcement of spending cuts they have now been scrapped altogether.
For people living with MND, social care reform is not just a perennial political football but an issue of life and death importance. MND causes severe disability, sometimes progressing extremely rapidly, so access to skilled care workers capable of meeting highly complex needs is essential. The current social care workforce crisis causes people with MND to be unable to find care workers they rely on, even as an underfunded system offers inadequate packages of support that fail to meet basic needs.
Failings in statutory services place immense pressure on family members providing unpaid care to their loved ones, while the cost of care pushes households into financial insecurity. The next Leader of the Opposition must not be content with more years of inaction but push the Government to take decisive steps on social care funding and systemic reform.
Support for scientific research and innovation in the UK was a major theme of both Labour and Conservative manifestos and is another issue of critical importance to people living with MND.
Currently, there is no cure for MND. Only one drug is available on the NHS to modify the progression of the condition- Riluzole, which has been available for almost 30 years and has only a modest impact on the speed of progression. Naturally, the MND community is desperate to see breakthroughs in MND research that can produce new and more effective treatments, and ultimately a cure.
However, there is little point in supporting innovative MND research if the resulting treatments are not available to patients. Unfortunately, the UK regulatory environment creates significant barriers to treatments aimed at rarer conditions such as MND. The first new treatment for decades, which offers real hope of a longer life for a small subgroup of the MND population, is currently being held up by red tape and has no prospect of it being available on the NHS any time soon.
The Government has promised to create a Regulatory Innovation Office to examine how the regulatory system impacts access to new and innovative technologies and treatments. The next Conservative leader must hold them to this promise and ensure that they deliver meaningful regulatory reform on behalf of patients.
As we approach the colder months, the decision to scrap winter fuel payments to pensioners in England and Wales, except for those on means-tested benefits, is a devastating blow for many people with MND. Means-testing processes take no account of the costs of managing and living with a condition like MND, which are significant.
We estimate that households affected by MND spend an average of £14,500 extra per year to cope with the condition. A significant proportion of this is due to increased energy costs arising from reliance on a wide range of powered equipment in the home.
As their condition progresses, people with MND must use medical equipment such as ventilators, cough assist,ance and saliva suction machines; mobility equipment such as powered wheelchairs, adjustable furniture, and hoists; and a range of communications equipment such as text-to-speech and eye-gaze devices. In addition, the condition causes immobility which leads to significantly higher heating needs during the winter months.
The decision to restrict Winter Fuel Payment to those on means-tested benefits will exclude many people with MND who are financially vulnerable due to their condition, despite not qualifying for means-tested support. The next leader of the opposition must challenge the decision to restrict WFP and push the Government on how it will protect the most vulnerable from financial hardship during the winter.
Though they may no longer be in government, the next leader of the Conservatives will be able to influence changes that will make a significant difference in the lives of entire families affected by this awful disease.
That is why we have written to every Conservative leadership candidate, calling on them to sign the MND Association’s pledge to support and champion the MND community over this parliament.
We hope every candidate will commit to doing so.
