Funding postcode lottery leads to call for change by Mow Cop MND sufferer James

Photo: James and Lisa Gilliver as they renewed their wedding vows three years ago

A North Staffordshire businessman who was diagnosed with Motor Neurone Disease in early 2024 has urged people to call on General Election candidates to sign the MND Guarantee.

James Gilliver formerly a fit and active 62-year-old, from Mow Cop, has seen his health deteriorate and will soon need an outdoor lift and internal alterations to the home he shares with his wife, Lisa, who has now become his full-time carer.

MND is a rare and life-shortening condition affecting the brain and nerves.

Public knowledge about the incurable disease has been increased in recent years by sportsmen with the condition, such as Rob Burrow who died at the beginning of June.

The MND Guarantee asks all Parliamentary candidates to commit to accessible homes, access to treatment, improved cost of living support, sustainable social care, and support for MND carers.

While coming to terms with the diagnosis, James and Lisa have also found themselves frustrated with Newcastle-under-Lyme Borough Council over a home Disabled Facilities Grant application.

Lisa said: “Government rules dictate that the grant is means tested, so we will get no help, but local policy is that the additional discretionary grant is linked to the means test. This is not the case with many other councils.”

Furthermore, we aren’t eligible for a social services Occupational Therapist to visit our property to advise on major adaptations.”

“James is a director of an IT company and they have taken into account the value of the business.

“The reality is that the value of the business isn’t relevant – to realise those assets the business would have to be sold.

“But there’s also a wider issue here, if you did have funds in the bank, it wouldn’t be long before all your savings were wiped out.

“Because we live in the rural area of Mow Cop, we will soon need an external lift so that James can get in and out of the property.

“That would absorb most of a Disabled Facilities Grant by itself, and we are also going to need internal adaptations. Surely there is a duty of care with the council. MND sufferers we are in contact with elsewhere do not have these issues.”

James has written to Stoke-on-Trent North candidates, including former MP Jonathan Gullis and Labour challenger David Williams, and he’s urging others to ask their local politicians to sign the MND guarantee.

More details of this are available on the MND Association website.

Tim Atkinson, National Campaigns Manager for the MND Association, said: “Those in our community need faster diagnosis, access to life-changing medicines and therapies and well-resourced health and social care.

“The act of providing care to family and friends often comes at a significant cost, both financially and emotionally, while too many people living with MND reside in unsuitable and unsafe housing.

“Unpaid carers are critical in providing support for people with MND but the monetary assistance they receive for doing so is simply not good enough.

“With the support of all political parties and their prospective parliamentary candidates, we can make a difference.” People are also being asked to back the campaign by using the hashtag #mndguarantee on social media.

James is a director of M & M Information Technologies Ltd, based in Longton, and commented “I have worked in Staffordshire my whole career, and have built a Staffordshire-based business that provides jobs to Staffordshire people.

“Both Lisa and I have worked for all our adult lives. We have also worked with several local charities and have invested thousands of volunteer hours as operational members of Staffordshire Search and Rescue Team.

“It’s sad that the Staffordshire authorities can’t or won’t provide some assistance.”

Lisa said: “It’s not easy having to grapple with bureaucracy while coming to terms with James’ deteriorating health. We get support from community nurses and the NHS have been extremely professional. Some people have even suggested we launch a crowdfunding campaign, but James has worked hard all his life, and he doesn’t want to be relying now on charity and goodwill.”

The MND Association say “MND is the short term for motor neurone disease, which affects the nerves known as motor neurones. These nerves are found in the brain and spinal cord, and they help tell your muscles what to do. “If you have MND, this means your movement will be affected and you are likely to get a wide range of symptoms. MND cannot be stopped or reversed, but therapies, equipment and medication can help manage symptoms.

“Please help raise awareness of MND and support the MND Guarantee – ask your prospective MP to sign the pledge at