- Down’s syndrome children are treated unfairly by the Government, is claimed
- They are not being put on organ transplant lists due to shorter life expectancy
- A petition for them to be treated equally has reached nearly 16,000 signatures
Children with Down’s syndrome are treated unfairly by the Government and not put on organ transplant lists, it has been claimed.
Those with the syndrome are discriminated against as they may not live as long as other children, campaigners claim.
A petition calling for ‘people with disabilities, such as Down’s Syndrome’ to be as entitled to organ transplants as everyone else’ has reached nearly 16,000 signatures.
When the petition hit 10,000 signatures the Government responded by saying ‘In the UK people with disabilities who need an organ transplant are assessed according to their needs in the same way as any other potential recipients.’
They insisted all patients undergo ‘careful assessment’ before they are placed on the transplant waiting list.
There have been further claims parents are being discouraged from seeking transplants for their Down’s syndrome children as they are unable to give informed consent and are unlikely to have the discipline to maintain the strict regimen of medicine to prevent organ rejection.
Parents have spoken of their anguish over the struggle to get organ transplants for their children.
Kirsty MacCuish, 28, has a nine month-old daughter who was born with Down’s syndrome and a small hole in the heart. She said her daughter Amelia will need surgery as she gets older.
Amelia is alike to 60 per cent of children who are born with a heart defect.
Ms MacCuish, told the Sunday Express it ‘doesn’t seem fair’ that she will have to jump through more hoops than other children as she already has ‘complex health problems’.
‘Our children’s lives matter just as much as any other child’ she said.
A petition calling for ‘people with disabilities, such as Down’s Syndrome ‘to be as entitled to organ transplants as everyone else’ has reached nearly 16,000 signatures
The life expectancy of those with Down’s syndrome is only 60, 21 years below the national average of 81.
Penny Green, director of the Down’s Heart Group charity, insisted that Down’s syndrome children are not getting referred by cardiac units.
She told the Sunday Express that there are two hospitals in the UK that carry out child heart transplants, Great Ormond Street in London and Freeman Hospital in Newcastle.
Parents are being discouraged from seeking transplants for their Down’s children as they are unlikely to have the discipline to maintain the strict regimen of medicine, it has been claimed
‘While they are fully prepared to assess a child with Down’s as any other child it seems Down’s children aren’t getting that far because cardiologists at a local level are making an assumption that a Down’s child won’t be accepted because of life expectancy and the ability to comply with the drug regime they have to take for the rest of their lives’ she said.
NHS Blood and Transplant’s medical director Professor John Forsythe said that every patient is assessed on an ‘individual basis in terms of prognostic and quality of life’.
‘Transplant teams work closely with families and carers so patients with disabilities can give informed consent and follow post-transplant care plans.’
‘Cardiologists assume that a Down’s child won’t be accepted because of life expectancy and the drug regime’ he added.