12 September 2024 News
Over 40 MPs and MSs from eight political parties have joined healthcare professionals to question the government’s decision to remove the Winter Fuel Payment for millions across the UK.
The letter, which was handed in today (12 September) by the MND Association at The Treasury offices in London, highlights how people with motor neurone disease (MND) are set to be pushed into greater financial hardship.
The costs associated with living with and managing MND are not considered by means-testing processes, so households face being excluded from this support despite being financially vulnerable.
Research shows that people living with MND spend an estimated £14,500 extra per year to cope with the condition. The decision to restrict Winter Fuel Payment to those receiving means-tested benefits will acutely impact the MND community.
As their condition progresses, people with MND must use costly and expensive medical equipment in the home such as ventilators, cough assistance and saliva suction machines; powered wheelchairs, adjustable furniture, and electric hoists; and a range of communications equipment such as text-to-speech and eye-gaze devices. The cost of energy to run this essential equipment can be several hundred pounds per month.
People living with MND experience significant muscle wastage, losing the body’s natural insulation against the cold. This means they have higher heating needs during the winter. Consequently, the withdrawal of the winter fuel payment will disproportionately impact households affected by MND and risks pushing them into financial hardship.
Ian Lev, 66, was diagnosed with a rare form of MND in 2015. He reached pension age in May this year, also taking out Personal Independence Payment (PIP).
He is not able to claim Pension Credit due to savings after cashing in private pension pots to buy items like a Wheelchair Accessible Vehicle, a ground floor extension and wet room along with a riser recliner and mobility scooter.
“My bills will increase in the winter because we must keep our bodies warm. This is a real kick in the pants to me because I need everything I can. In my nine years of MND, my expenditure has been approximately £100,000.
“Before I was diagnosed, we looked at my pension pot to continue enjoying our life once we were retired and I have obviously missed the last 10 years. This decision is not right, and they are asking people to dip into their own pockets for basic survival. The cold makes us seize up. Once you get the cold, you really have no control in telling your legs how to walk or your arms what to do.
“It's okay saying you can wrap up a blanket, but what if you move about in your wheelchair in the house? The heating is important, as well as what we must pay in using electricity to run our gizmos that help us to survive.
“I've had the central heating turned up a few times when it has got cold. I like to dress in a t shirt and feel comfortable. In the cold months, it will be fully on. Because I don't go out, it must be warm. I think the Labor Party has gone against what it would say, and I fear for every MND warrior who has to worry about paying their bills.”
This news comes at a time when people living with MND require more economic assistance than ever. The MND Association has paid out more than £1.4 million in financial support grants in the first six months of the year.
This is 21% higher than the same time last year and the largest ever figure within this period in the history of the scheme. As of 16 July 2024, 856 families impacted by MND have received support with household bills and food shopping costs as the cost-of-living crisis deepens.
With the industry regulator Ofgem increasing its cap on gas and electricity prices from October and further forecasts predicted into 2025, our community is facing unprecedented pressures which we must tackle immediately.
This will weigh heavily on the mental and emotional well-being of families affected by the disease. The Through The Roof campaign was launched on the back of a report into people with MND and their carers by the MND Association.
Of those who reported being negatively affected by economic strains because of the disease, 86% reported an increase in anxiety. Furthermore, 77% reported affected sleep and almost one-third (30%) have sought support for their mental health, such as through a GP or counsellor.
“When MPs voted on Tuesday (10 September), they should have been aware that the proposed Winter Fuel Payment cut will put terminally ill people at greater risk of financial insecurity and energy poverty.
“Means-testing the Winter Fuel Payment will take no account of the unavoidable costs of living with a highly disabling condition like MND. People coping with this devastating condition do not deserve to lose the support they rely on this winter.”
MND is a fatal, rapidly progressing disease that affects the brain and spinal cord. It can affect a person’s ability to walk, talk, eat and ultimately to breathe. A third of people die within a year of diagnosis and half within two years. There is currently no effective treatment and no cure.
Full list of signatories who signed the letter
Tanya Curry, Chief Executive, Motor Neurone Disease Association
Dr Al Pinkerton MP, Member of Parliament for Surrey Heath
Ann Davies MP, Member of Parliament for Caerfyrddin
Anna Sabine MP, Member of Parliament for Frome and East Somerset
Ben Lake MP, Member of Parliament for Ceredigion Preseli
Bradley Thomas MP, Member of Parliament for Bromsgrove
Carla Denyer MP, Member of Parliament for Bristol Central and co-leader of the Green Party
Dr Caroline Johnson MBBS MRCPCH MP, Member of Parliament for Sleaford and North Hykeham and Shadow Minister for Health and Social Care
Claire Hanna MP, Member of Parliament for Belfast South and Mid Down
Daisy Cooper MP, Member of Parliament for Member of Parliament for St Albans, Liberal Democrat Health and Social Care Spokesperson and Deputy Leader
Sir Desmond Swayne MP, Member of Parliament for New Forest West
Freddie van Mierlo MP, Member of Parliament for Henley and Thame
Ian Byrne MP, Member of Parliament for Liverpool West Derby
James MacCleary MP, Member of Parliament for Lewes
James McMurdock MP, Member of Parliament for South Basildon and East Thurrock
Jess Brown-Fuller MP, Member of Parliament for Chichester
Jim Shannon MP, Member of Parliament for Strangford
Joe Robertson MP, Member of Parliament for Isle of Wight East
Sir John Whittingdale OBE MP, Member of Parliament for Maldon and Shadow Minister of State for Health and Social Care
Kim Johnson MP, Member of Parliament for Liverpool Riverside
Liz Saville Roberts MP, Member of Parliament for Dwyfor Meirionnydd
Llinos Medi MP, Member of Parliament for Ynys Môn
Manuela Perteghella MP, Member of Parliament for Stratford-on-Avon
Martin Wrigley MP, Member of Parliament for Newton Abbot
Dr Neil Shastri-Hurst MP, Member of Parliament for Solihull West and Shirley
Olly Glover MP, Member of Parliament for Didcot and Wantage
Peter Bedford MP, Member of Parliament for Mid Leicestershire
Rachael Maskell MP, Member of Parliament for York Central
Robin Swann MP, Member of Parliament for South Antrim
Sarah Dyke MP, Member of Parliament for Glastonbury and Somerton
Sorcha Eastwood MP, Member of Parliament for Lagan Valley
Siân Berry MP, Member of Parliament for Brighton Pavilion
Victoria Atkins MP, Member of Parliament for Louth and Horncastle and Shadow Secretary of State for Health and Social Care
Vikki Slade MP, Member of Parliament for Mid Dorset and North Poole
Dr Altaf Hussain MS, Member of the Senedd for South Wales West and Shadow Minister for Social Care
Cefin Campbell MS, Member of the Senedd for Mid and West Wales
Darren Millar MS, Member of the Senedd for Clwyd West
James Evans MS, Member of the Senedd for Brecon and Radnorshire
Jane Dodds MS, Member of the Senedd for Mid and West Wales and Leader of the Welsh Liberal Democrats
Llyr Gruffydd MS, Member of the Senedd for North Wales
Mabon ap Gwynfor MS, Member of the Senedd for Dwyfor Meirionnydd and Plaid Cymru Spokesperson for Health, Social Care and Housing
Mark Isherwood MS, Member of the Senedd for North Wales
Natasha Asghar MS, Member of the Senedd for South Wales East
Rhun ap Iorwerth MS, Member of the Senedd for Ynys Môn and Leader of Plaid Cymru
Russell George MS, Member of the Senedd for Montgomeryshire
Rhys ab Owen MS, Member of the Senedd for South Wales Central
Sam Rowlands MS, Member of the Senedd for North Wales and Shadow Minister for Health
Samuel Kurtz MS, Member of the Senedd for Carmarthen West and South Pembrokeshire
Professor Chris McDermott, Professor of Translational Neurology at Sheffield Institute for Translational Neuroscience (SITraN)
Aine Stockton, Senior Specialist Physiotherapist in MND, Middlesbrough MND Care Centre
Alison Morton, Palliative and End of Life Care Lead, Dorset County Hospital NHS Foundation Trust
Anthony Hanratty, Advanced Nurse Specialist & Clinical Lead, Middlesbrough MND Care Centre
Caroline Bidder, Network Lead Care coordinator, South Wales MND Care and Research Network
Charlotte Massey, Specialist Neuromuscular and Respiratory Physiotherapist, NIHR Doctoral Fellow, SITraN
Dr Claire Stockdale, Consultant in Palliative Medicine, Severn Hospice
Dr Emily Mayberry, Senior Clinical Psychologist Sheffield MND Care and Research Centre & Clinical Neuropsychology Services, Sheffield Teaching Hospitals NHS Trust
Emma Wood, Clinical Lead Dietitian & Dietetic Extended Scope Practitioner in MND, Middlesbrough MND Care Centre
Jan Clarke, MND Nurse Consultant, National Hospital of Neurology and Neurosurgery London
Jean Sowerby, MND Specialist Nurse and Outreach Practitioner, Middlesbrough MND Care Centre
Jenny Rolfe, Consultant Occupational Therapist, Accora
Karen Robinson, Consultant Dietitian
Rachael Marsden, MND Nurse Consultant, Oxford Care and Research Centre
Tracey McDonald, Specialist MND Physiotherapist, Lancashire Teaching Hospitals NHS Foundation Trust