Severely disabled man challenges halt to Personal Independence Benefit payments after 28 days in hospital

Cameron Mitchell, aged 19, of Carlisle, cannot walk or speak. He suffers frequent seizures and muscle spasms and is fed through a tube. He has spent several periods of his life in hospital and recently had hospital care from 27 December, 2020 to 30 June, 2021, when he was transferred to a hospice for step-down care.

His mother, Nicola Clulow is Cameron’s full time carer and together with Cameron’s father, provides constant and indispensable support to medical staff while her son is in hospital. 

Cameron Mitchell with his mother, Nicola Clulow

Cameron receives Personal Independence Payment (PIP) and his mother receives Carer’s Allowance. The benefits enable the family to look after Cameron, which they must continue to do while he is in hospital, staying at his bedside, attending to his disability related needs and keeping medical staff aware of changes in his condition, including identifying when he is experiencing seizures, pain or discomfort.

After Cameron’s condition stabilised but before it was possible to discharge him from hospital, Cameron’s family took him on daily trips outdoors, and as his sole carers, provided essential care such as suctioning his chest, looking after his stoma bag, monitoring his condition and the machines that support him.

Cameron Mitchell with his father, Kevin

However, under a rule introduced in the Social Security (Personal Independence Payment) Regulations 2013, Cameron’s weekly PIP payments of £152.15 and as a result his mother’s weekly Carer’s allowance of £67.60 were halted suddenly in May 2021 when the Department of Work and Pensions (DWP) became aware that Cameron had been in hospital care for more than 28 days. After 28 days, DWP rules state that since the NHS is meeting the costs of care, the DWP no longer needs to pay.

Cameron and his mother will have to pay back benefits received from 25 January, when the rule states the PIP and Carer’s Allowance payments should have been stopped. The support that will be lost due to application of the rule already amounts to almost £3,500 in PIP and over £1,500 in Carer’s Allowance and since Cameron is now in a hospice and it is still assumed that his care needs there are being met by others, the payments will not be resuming until he is able to return home.

Represented by law firm Leigh Day, the family are challenging the rule (Regulations 29 and 30 of the Social Security (Personal Independence Payment) Regulations 2013) that enforces the halting of PIP payments after someone in Cameron’s situation has been in hospital care for more than 28 days. They say it is discriminatory contrary to Article 14 read with Article 1 Protocol 1 of the European Convention on Human Rights (ECHR) and Article 8 ECHR. They also say the Regulations are irrational because they cut against the overarching purpose of Personal Independence Payments, namely to provide support for disability-related costs, by reference to a person’s need for care or assistance with daily living needs and mobility. 

The family say Cameron’s case is very similar to that of Cameron Mathieson, a five-year-old Warrington boy whose family challenged a similar DWP rule which axed his Disability Living Allowance (DLA) after he had been in Alder Hey Hospital, Liverpool for more than 84 days in 2015. In that case the Supreme Court ruled that suspending a child’s DLA after 84 days in hospital breached his human rights.

Leigh Day solicitor Carolin Ott has sent a pre-action protocol letter to the DWP detailing the legal challenge to the 28-day regulation, asking Work and Pensions Secretary Therese Coffey to reinstate Cameron’s entitlement to PIP, to change the rule or to ensure that it no longer operates in such a way as to unlawfully discriminate against severely disabled individuals whose essential care needs cannot be met without ongoing input from a known carer.

The letter is a precursor to an application for judicial review of the regulation.

Cameron’s mother and carer, Nicola Clulow said: 

“Cameron has been hospitalised many times during his life and we have always stayed by his bedside day and night because he needs us to communicate for him and to help the medical staff identify and treat his complicated seizures. He can deteriorate very quickly unless you know what to look for.

“In December Cameron had to be moved to Newcastle hospital. To suddenly be hit with the realisation that I was going to have meet considerable extra costs and then find that I would have to do this on even less money caused me massive worry and stress when my only focus should have been on Cameron and his younger brother at home.”

Leigh Day solicitor Carolin Ott said:

“Cameron’s care needs are not and cannot be met by the NHS alone without the input of known carers, and those care needs do not suddenly cease to exist after Cameron has spent 28 days in hospital. Our client is arguing that the rule requiring suspension of PIP discriminates between disabled adults who require hospitalisation for more than 28 days, whose care needs cannot be met other than with the input of a known carer, as compared to those who are hospitalised for less than 28 days. 

“His case is also that the rule causes disproportionate disadvantage to individuals whose neurodisability means that their care needs cannot be met other than by the presence of a known carer. Our client is arguing that the rule runs contrary to the purpose of PIP, a benefit intended to provide support for disability-related costs taking into account an individual’s needs.”