Dad of Scottish boy with terminal illness forced to sell family home amid call for help
The parents of a Scottish boy with a rare condition have sold their home while shelling out thousands of pounds on his treatment.
Six-year-old Jamie Tierney suffers from rare muscle wasting disease Duchenne muscular dystrophy (DMD). His dad, also Jamie, has called on more support to help families with terminally ill children.
The 33-year-old said making his family homeless was the best options amid the difficult circumstances they find themselves in. The family can put money from the sale towards treatment for Jamie.
However, dad Jamie believes there should be a body set up to support families navigate the difficulties a terminal diagnosis brings - from accessing benefits, to help with housing.
Jamie, 33, from Dunfermline, says the family home became unsuitable for his son as they are now staying with different family members while they wait to hear if they will be given a council house, reports the Record.
They receive support from the Muscular Dystrophy UK charity, and the NHS, as well as carers' allowance, but have to deal with each organisation individually, and Jamie believes a streamlined service would make it easier for families.
Jamie's call for change comes after the family were denied the chance for Jamie junior to get a wonder medication which is provided free to the NHS.
The family has headed abroad on a number of occasions for Jamie to receive treatment. Givinostat, a groundbreaking new life-extending treatment which slows the progress of the condition, has been cleared for use in the UK and is being used in England.
But Scottish health boards have not given the drug to any patients through an early access programme, despite patients south of the border benefitting from it.
Jamie said: "We sold our family home for many reasons - it was a townhouse with too many stairs, completely unsuitable for Jamie. We needed to find a way to give him independence.
"Jamie's needs are increasing year by year. Our street is on a hill, and watching the kids play there breaks my heart - knowing Jamie can't join in this summer.
"We need to keep money for future treatments and medical needs for Jamie. I think there should be supportive pathways for families who are in this situation and to aid them with options and help as currently we are jumping through hoops.
"We were told we were the last family accepted on a clinical trial in the U.S. We were petrified but ready to move for Jamie. It fell through - we were devastated."
Jamie's complex condition gradually weakens all the muscles in the body and affects one in 5,000 boys. It also has a life expectancy of around mid-20s.
The family have travelled to both the US and Mexico in the search for potential treatment options as they have fundraised tirelessly through raffles and help from family and friends.
Jamie added: "As of this Friday, we're technically homeless. We can't buy again. My wife had to give up work to care for Jamie, and I'm in the early stages of building a new business that just about keeps us afloat.
Join Edinburgh Live's Whatsapp Community here and get the latest news sent straight to your messages.
"Housing are trying to help, but we're told we just meet the criteria of 'homeless'. Yes, we could rent privately but a suitable ground-floor property would cost double our old mortgage.
"The system isn't built for families in extreme, complex situations and when you don't fit the system the system forgets you. How are families supposed to survive like this? I think there's certainly got to be some sort of help.
"If we weren't in this situation my wife and I would both be working. She is no longer working and the stress and worry on your child's health affects your work. I'm in a first year start up struggling to support us.
"If we had to go private rent it would financially cripple us. We are self funding Jamie's treatments with fundraising but fundraising has become harder and harder for us. We just feel sorry for other families in this situation.
"There's families that are being affected every day. I wouldn't wish this on anyone. We would live on the streets for Jamie to be healthy, but the system doesn't seem to consider us."
You can donate to their GoFundMe page here.
The Scottish Government said: "We have every sympathy with the Tierney family and the hardships they're facing. We want disabled people and carers to get the support they are entitled to, making sure the application process is as straightforward as it can be.
"Child Disability Payment is designed to mitigate some of the additional costs of caring for a disabled child or young person and we have a fast-track application route for people who have a terminal condition.
"We have also transformed financial support for unpaid carers in Scotland, in recognition of the impact caring can have on a family's finances.
"Local authorities will be provided with £15 billion this financial year for a range of services, including housing options services - an advice process councils use when someone approaches them with a housing problem."
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Rhyl Journal
an hour ago
- Rhyl Journal
Patients sought for new NHS trial for brain cancer after man sees tumour vanish
The NHS study will recruit 16 people over an 18-month period and has been set up in memory of Baroness Margaret McDonagh, who died of the disease. People diagnosed with deadly glioblastoma will receive immunotherapy with the drug ipilimumab before undergoing standard treatment, when their immune system is at its strongest. The trial, from University College London Hospital's National Hospital for Neurology and Neurosurgery, follows a previous one on the same drug which closed because of lack of recruitment. One patient from that trial, Ben Trotman, is still showing no signs of glioblastoma following the treatment – well over two years since he got the drug in a world first. Most people with glioblastoma die within 12-18 months. Mr Trotman was diagnosed with glioblastoma in October 2022, when he was 40. Now aged 43 and two years and eight months on from having the treatment, his scans are clear and there are no signs of tumour. Consultant medical oncologist, Dr Paul Mulholland, who is leading the new trial and treated Mr Trotman, said: 'It is very unusual to have a clear scan with glioblastoma, especially when he didn't have the follow-up surgery that had been planned to remove all of the tumour that was initially visible on scans. 'We hope that the immunotherapy and follow-up treatment Ben has had will hold his tumour at bay – and it has so far, which we are delighted to see.' Mr Trotman got married to Emily two months after the immunotherapy treatment and in April, his daughter Mabel was born. Mrs Trotman said: 'Getting this diagnosis was the most traumatic experience. We were grappling with the fact that Ben had gone from being apparently perfectly healthy to having months to live. 'Had we not met Dr Mulholland, that would have been it for us. We felt we had a lucky break in an otherwise devastating situation.' Mr Trotman went on to have the current standard treatment of radiotherapy and chemotherapy. He has quarterly scans, which continue to be clear. Mr Trotman said: 'We obviously don't know what the future holds but having had the immunotherapy treatment and getting these encouraging scan results has given Emily and I a bit of hope. 'We are focused on rebuilding the life we thought we had lost and enjoying being parents.' Dame Siobhain McDonagh MP led a fundraising campaign to raise more than £1 million to cover the costs of the new trial. Her sister, Baroness McDonagh, died from glioblastoma in 2023. Dame Siobhain said: 'My beloved sister Margaret was appalled to discover that there had been no advances in brain cancer treatment for decades when she was diagnosed with glioblastoma. 'Changing this was Margaret's final campaign and one that I have continued in her memory. 'I am so grateful to the many people who knew and respected Margaret who have come together and helped to raise funds and campaign for this new trial that we are calling Margaret's Trial.' Dr Paul Mulholland said: 'When I met Margaret she said to me 'what can I do to support you to cure this disease?'. 'I am incredibly grateful to her and to Siobhain whose campaigning and fundraising in her sister's memory has led to this new clinical trial opening for patients with this most aggressive form of brain cancer that has such a poor prognosis, with most patients surviving just nine months after diagnosis. 'The crucial element of this trial is that patients will have their immune system boosted by the drug before they have any other treatment, when they are fit and well enough to tolerate the immunotherapy. 'We're taking everything we have learned from previous trials into this new study and we are already planning follow-on trials. 'My aim is to find a cure for glioblastoma.' The National Brain Appeal is currently funding two posts in support of Dr Mulholland's research. Treatment will take place at the NIHR UCLH's Clinical Research Facility and at the National Hospital for Neurology and Neurosurgery. Patients interested in the new Win-Glio trial should discuss it with their consultant.
Rhyl Journal
an hour ago
- Rhyl Journal
Almost half of people do not think 10-year plan will boost GP access
More than four in 10 also believe the 10-year plan will make no difference or will not improve waiting times in A&E. However, there is huge support for some of the ideas included in the blueprint, with the overwhelming majority backing the creation of neighbourhood health centres, the expansion of the NHS app and more mental health support in schools and colleges. The 10-year health plan was unveiled by Prime Minister Sir Keir Starmer earlier this month, and set out a series of shifts to bring care much closer to people's homes, reducing the reliance on hospitals and A&E. Key reforms include an enhanced NHS app, giving patients more control over their care, new neighbourhood health centres open six days a week and at least 12 hours a day, and new laws on food and alcohol to prevent ill health. A survey of 1,023 adults in Britain, conducted by Ipsos for the PA news agency, asked people how they think the plan will impact access to healthcare, such as getting a GP appointment, A&E waiting times and waiting times for routine hospital treatment. Some 35% said the plan will have no impact on getting a GP appointment, while 14% believe it will make things harder. This compares with the 29% of people who said they think it will make getting an appointment easier. More than a third (37%) said it will make no difference to waiting times in emergency departments, while almost one in 10 (9%), said they believe it could worsen waiting times, compared with 30% who said it will improve them. Meanwhile, 31% said the plan will have no impact on waiting times for hospital treatment, 11% believe the plan will worsen waiting times and 34% said they think the measures will help. However, a number of proposals outlined in the plan were strongly backed by the public. Some 84% said they supported the creation of a single patient record, while 78% backed the creation of neighbourhood health centres, 73% support the expansion of the NHS app and 72% are in favour of more mental health support in schools and colleges. However, more than a quarter (27%) of people do not support making hospitals fully AI enabled, compared with 44% who would back the move. Almost one in five (18%) said they would not support so-called 'patient power payments', which would allow patients to hold back some of the payment for their care if they are not satisfied, while 42% would support the measure. Some proposals aimed at helping people to lead healthier lives were also strongly supported. A ban on the sale of high-caffeine energy drinks was backed by 78% of people, while 69% back plans to restrict junk food advertising. However, almost one in five (18%) tended to disagree with measures that could see alcoholic drinks labelled with nutritional information, although 57% backed the move. One in four people think the measures included in the plan will make no difference to patients, the poll found. Almost one in 10 (9%) said they think the changes will make things worse, while 35% believe it will improve the health service. A similar proportion, 23%, said the 10-year health plan will make no difference to NHS staff, while 13% said it could make things worse and 33% believe it will have a positive effect. A Department of Health and Social Care spokesperson said: 'We're getting on with the job of delivering for patients, with NHS waiting lists falling by 260,000 since July 2024, delivering more than 4.6 million additional appointments since the general election and recruiting over 1,900 extra GPs to fix the front door of the NHS. 'Backed by an additional £29 billion, our 10-year health plan will seize the opportunities provided by new technology, medicines and innovation to deliver better care for all patients, no matter where they live or how much they earn, and better value for taxpayers. 'It is no surprise the plan is popular with patients, it was the result of the biggest conversation with staff, patients and the public since the formation of the NHS, with more than a quarter of a million contributions.'
South Wales Guardian
an hour ago
- South Wales Guardian
Almost half of people do not think 10-year plan will boost GP access
More than four in 10 also believe the 10-year plan will make no difference or will not improve waiting times in A&E. However, there is huge support for some of the ideas included in the blueprint, with the overwhelming majority backing the creation of neighbourhood health centres, the expansion of the NHS app and more mental health support in schools and colleges. The 10-year health plan was unveiled by Prime Minister Sir Keir Starmer earlier this month, and set out a series of shifts to bring care much closer to people's homes, reducing the reliance on hospitals and A&E. Key reforms include an enhanced NHS app, giving patients more control over their care, new neighbourhood health centres open six days a week and at least 12 hours a day, and new laws on food and alcohol to prevent ill health. A survey of 1,023 adults in Britain, conducted by Ipsos for the PA news agency, asked people how they think the plan will impact access to healthcare, such as getting a GP appointment, A&E waiting times and waiting times for routine hospital treatment. Some 35% said the plan will have no impact on getting a GP appointment, while 14% believe it will make things harder. This compares with the 29% of people who said they think it will make getting an appointment easier. More than a third (37%) said it will make no difference to waiting times in emergency departments, while almost one in 10 (9%), said they believe it could worsen waiting times, compared with 30% who said it will improve them. Meanwhile, 31% said the plan will have no impact on waiting times for hospital treatment, 11% believe the plan will worsen waiting times and 34% said they think the measures will help. However, a number of proposals outlined in the plan were strongly backed by the public. Some 84% said they supported the creation of a single patient record, while 78% backed the creation of neighbourhood health centres, 73% support the expansion of the NHS app and 72% are in favour of more mental health support in schools and colleges. However, more than a quarter (27%) of people do not support making hospitals fully AI enabled, compared with 44% who would back the move. Almost one in five (18%) said they would not support so-called 'patient power payments', which would allow patients to hold back some of the payment for their care if they are not satisfied, while 42% would support the measure. Some proposals aimed at helping people to lead healthier lives were also strongly supported. A ban on the sale of high-caffeine energy drinks was backed by 78% of people, while 69% back plans to restrict junk food advertising. However, almost one in five (18%) tended to disagree with measures that could see alcoholic drinks labelled with nutritional information, although 57% backed the move. One in four people think the measures included in the plan will make no difference to patients, the poll found. Almost one in 10 (9%) said they think the changes will make things worse, while 35% believe it will improve the health service. A similar proportion, 23%, said the 10-year health plan will make no difference to NHS staff, while 13% said it could make things worse and 33% believe it will have a positive effect. A Department of Health and Social Care spokesperson said: 'We're getting on with the job of delivering for patients, with NHS waiting lists falling by 260,000 since July 2024, delivering more than 4.6 million additional appointments since the general election and recruiting over 1,900 extra GPs to fix the front door of the NHS. 'Backed by an additional £29 billion, our 10-year health plan will seize the opportunities provided by new technology, medicines and innovation to deliver better care for all patients, no matter where they live or how much they earn, and better value for taxpayers. 'It is no surprise the plan is popular with patients, it was the result of the biggest conversation with staff, patients and the public since the formation of the NHS, with more than a quarter of a million contributions.'
