British citizens whose disabilities were caused by thalidomide push for better government support as they age

From The Sunday Times in the UK:

When Steve Sinclair (pictured) found himself becoming desperately short of breath with pains in his chest, he knew he faced a stark choice.

To keep himself alive was going to cost significant sums of money, and as a thalidomider with myriad additional health problems and unable to work, it would be money he could ill afford.

“Being confined to a wheelchair and having a gland taken out when my kidney was removed had caused my weight to spiral to 27 stone,” he said.

“I knew if something drastic wasn’t done I would be dead within a few years.”

His doctor recommended a gastric band, but, Sinclair said: “The waiting list on the NHS was three or four years and I wouldn’t have lasted that long. So I had to pay for it myself.” The operation cost him £9,000.

It was the kind of medical emergency that has become all too common for Sinclair and his fellow thalidomide victims as they get older.

Sinclair was born with impaired hands and with the bottom part of his right leg missing, after his mother was given the morning-sickness drug.

In the 49 years since, he has endured 35 operations which resulted in him losing a kidney, having a hip replaced and his intestines redirected. He also suffers from arthritis and osteoporosis, conditions that have led to him being confined to a wheelchair.

Such enduring complications are common for thalidomiders, as the drug’s victims are known.

As they age, so the medical problems spiral, resulting in them incurring costs which they can ill afford. The situation has led to campaigners, backed by this newspaper, lobbying the government for direct payments to help raise their living standards.

These would also serve as belated compensation for the fact that a government agency, the Cohen committee, permitted the drug to be prescribed on the NHS after judging it a “remedy of proven value” in the 1950s.

This weekend it emerged that ministers have tabled a multi-million-pound offer — and an apology — as recognition of the thalidomiders’ increased needs. Both sides are hoping to secure a deal soon.

The situation for many thalidomiders, meanwhile, has become intolerable, as they endure the neglect and indifference of NHS bureaucracy.

Last week, The Sunday Times reported how Veronica Pakenham, who is also confined to a wheelchair because all four of her limbs were shortened by the drug and is incapacitated further following a stroke, was told by a health trust that she did not deserve 24-hour care.

Days later that decision was reversed, after Greenwich Primary Care Trust reviewed its decision. Pakenham will now be able to live outside the hospital where she is being cared for after her stroke.

Sinclair’s decision to pay for a gastric band two years ago reduced his weight to a manageable 14 stone, but further complications awaited him.

Two weeks ago, at home with his wife Angela in the village of Lindean near Selkirk in the Scottish borders, he was seized by excruciating stomach pains which caused him to fall out of his wheelchair.

“It felt like red-hot pokers being stuck into me,” he said.

“I’m used to pain, I have lived with it every day of my life, but this was the worst I can ever remember. I thought I was literally going to burst.”

His wife, who could not lift him, phoned for an ambulance but, despite Sinclair’s screams in the background, the emergency operator said her husband was “not a priority” and would not give any undertaking as to when or if an ambulance would be dispatched.

“I had to crawl outside up the gravel to the car and my wife managed to get me inside,” Sinclair said.

Once at the hospital it was discovered that some food had become lodged, causing his stomach to spasm against the unyielding pressure of the gastric band.

A doctor finally managed to loosen it. Sinclair, who has nothing but praise for the staff who attended to him at hospital, has made a complaint to the Scottish ambulance service over its refusal to help.

Sources indicated that Sinclair’s condition had been assessed by the telephone operator as “not serious” — the lowest level and one which often does not result in an ambulance being sent at all.

A spokesman for the service said: “Emergency ambulances are dispatched to patients based upon their clinical need. We have received a complaint from the patient and will respond to him with a full explanation.”

Other thalidomide victims are also finding life increasingly difficult. James McNally, a thalidomider from Belfast, has had one of his benefits slashed after he lost any use of his most functional arm following an accident.

McNally, 48, was born with deformities to both arms, with a shortened left limb and a more able right one. Last year, he fell and fractured his right arm and is now unable to use it at all. As a result he cannot shower or dress without help.

Prior to the accident McNally, who also suffers from chronic asthma and is fitted with a pacemaker, was receiving disability living allowance (DLA) partly comprised of a mobility payment at the top rate of £49.10 a week.

Following the accident, however, he was reassessed and has now been told he is only entitled to the lower tier payment of £18.65 a week.

“I was very surprised since I can’t even use the bus any more and if I do try to go out I have to use a taxi, which is expensive,” he said. He has lodged a complaint with the Northern Ireland government’s department for social development.

A spokeswoman for the department said: “The rules governing DLA stipulate that it is not the illness or disability itself that leads to the award but the personal care and help in getting around that a person needs.”

Nick Dobrik, the lead campaigner on behalf of the thalidomiders, welcomed the prospect of a government deal recognising their demands. He said: “The whole point about asking the government for ex gratia payments is to improve the thalidomiders’ quality of life.

“The payments would also be recognition of the fact that thalidomiders are in this position partly due to the British government.”