Why dad continues to campaign 10 years on from son's death

This came following a Government rule that anyone under the age of 16 who spent 84 days or more in any NHS facility would have this benefit removed, regardless of the extent of their disability, because in theory the NHS should cover 'all their needs'.

Once you hit 16, this was lowered to only 28 days.

This benefit removal was despite Craig, 53, and his wife Lynette Mathieson, who live in Great Sankey, both working 168 hours a week between them to help cover the care for his muscular dystrophy and cystic fibrosis.

Lynette (L) and Craig (R) Mathieson (Image: Craig Mathieson)

In the time Cameron spent in hospital, this cost Craig and Lynette roughly £8,500 in the benefits they should have received.

After this, they spent four and a half years fighting the Government and the courts, claiming that Cameron’s basic human rights had been violated.

The case made it all the way to the Supreme Court, where it was judged in favour of Craig and his family.

Cameron died when he was five, two years into the case.

Craig with his late son Cameron (Image: Craig Mathieson)

This was ten years ago in 2012, and following the successful court ruling, the 84-day rule for suspension of DLA was removed for children under 18 years old.

Despite a rebrand of DLA into PIP (Personal Independence Pay) the 28-day rule remains for people over the age of 18, regardless of the extent of their disability and the personal circumstances of their care.

Not only does the rule remain, but the number of PIP suspensions are on the rise.

Craig Mathieson said the figures 'seem to me to illustrate that the principle at play is to give these people umbrellas only to take them away as soon as it starts to rain.

Craig spoke about Cameron’s legacy and why he feels the PIP suspension rules are still a human rights violation.

“The costs associated with being disabled do not go away just because you go into hospital," he said.

"Caring for a disabled person costs a great deal, and no matter what the NHS claim, the nurses certainly do their best.

"But it is not enough to meet everybody's disability needs when you are in a hospital.”

Craig also spoke of how the financial strain of the DLA being taken away left them selling their belongings, taking loans and donations from friends and family and being unable to take his siblings to visit Cameron.

Cameron with his brother (Image: Craig Mathieson)

“All we were asking for was just to be left alone with what we had," Craig continued.

"We would have still required the help of friends and family as we did. We would have still gone further into debt as we did.

"But it would not have been quite as bad.”

Regarding the increased number and proportion of PIP suspensions both nationally and in Warrington, Craig believes it is a growing issue that disproportionally affects those with profound and multiple learning disabilities (PMLD).

“If somebody is dependent on their PIP for carers at home, they go into hospital, they lose the PIP after 28 days," he said.

"That carer can no longer be paid or retained or kept on the books.

"Then they stay in hospital for even longer, and without the money they need to meet their needs, stay longer and longer.”

This led Craig to challenge the Government’s claims that there are no links between someone having PMLD and PIP suspension.

“There is a direct causation, there is a link there, isn't there?" he said.

"Just because Government officials say I cannot see any evidence does not mean there is not any.

"That is what they do all the time: ‘Yeah, I do not recognise that characterization. I do not recognise those facts yet.’

"Because you haven't looked for them. You have deliberately looked over them.”

Something that Craig reiterated repeatedly was the importance of the European Convention on Human Rights to Cameron’s case being successful, and his disgust that the Government was looking to repeal it in a bill of rights tabled.

“From a human rights point of view, the harm that is caused by the arbitrary removal of benefits was showed in Cam's case, I believe that that evidence holds true for those who are just as vulnerable as a child by virtue of their disabilities, and that the precedent we set should apply to them as well," he added.

"If that means that the easiest thing to do is repeal the 28-day rule once and for all, then just repeal it.”