The parents of a man with Asperger syndrome say the NHS must ‘wake up’ to its duty to provide adequate care support.
They spoke out after lawyers overturned their local NHS’s decision to deny their son access to vital care support.
Richard Jackman: he “will now get the help he needs to lead a full and independent life”
Potentially life-threatening
Richard Jackman, 28, has a hormone condition called panhypopituitarism.
It means the Wiltshire man is at risk at any time of falling into an adrenal crisis. This is where the body is unable to produce a sufficient amount of cortisol. It is potentially life-threatening.
Patients with Richard’s condition are generally able to administer an emergency injection of hydrocortisone themselves.
However, Richard’s Asperger syndrome means he does not recognise the symptoms soon enough. He also does not have the fine motors skills to prepare the medication.
Levels of independence
Richard’s parents, Alice and Andrew, have learned how to administer the injection. However, they were keen to boost Richard’s levels of independence. They therefore asked Wiltshire Clinical Commissioning Group (CCG) to provide him with a care worker who could assist with injections if they were required.
The CCG refused to commission this care. They said a carer trained to recognise the signs of a crisis could meet Richard’s care needs by calling an ambulance.
After years of attempting to persuade the CCG, Richard instructed specialist lawyers at Irwin Mitchell to investigate his case and help him access the support he requires.
The legal experts successfully challenged CCG’s decision under the Equality Act 2010. Richard and his family are now hoping that their case will be a landmark. They hope it will ensure people with complex needs are able to get the medical support they require.
‘Significant lesson for NHS commissioners’
Fiona McGhie, a specialist Public Law lawyer at Irwin Mitchell, represented Richard. She said: “This case contains a significant lesson for all NHS commissioners and providers who need to support patients with both learning difficulties and a physical illness or condition.
“The CCG ultimately accepted that the support being sought by Richard was a reasonable adjustment under the Equality Act. CCGs need to ensure they are meeting their responsibilities when it comes to supporting disabled people and making reasonable adjustments where appropriate.
“The issues raised in this case should act as a wake-up call to CCGs on this hugely important matter.”
Failure to make ‘reasonable adjustments’ to support
Irwin Mitchell did not challenge the decision through a judicial review. Instead, the firm chose to consider the CCG’s move as a breach of its duties under the Equality Act 2010. It successfully argued that the CCG was failing to make ‘reasonable adjustments’ in the way it commissioned support.
Wiltshire CCG defended its decision until the second day of a trial at Bath County Court. It then settled the case, agreeing to provide an injecting carer to support Richard when his parents were not available. It also agreed to pay a five-figure sum in damages. This was to compensate for the lack of appropriate care for Richard for the past few years.
Richard’s mother Alice commented on the case. She said: “We are determined to ensure that, despite his disabilities and needs, Richard is able to enjoy as much independence as possible. We felt that at his age he simply should not have to live in the shadow of his parents.
‘Delighted that common sense has prevailed’
“It was very hard to understand why the CCG would not initially offer us the right support on this issue. But we are delighted that common sense has prevailed and Richard will now get the help he needs to lead a full and independent life.
“We also hope that by taking this action, we have ensured that many other people across the country in a similar position to Richard are also able to access support that will help them get the best from life.”
Eve Jackson is Activism Campaigns Manager at Mencap. She said: “Richard Jackman’s case highlights the battle many people with a learning disability and their families face in getting the reasonable adjustments they need from the NHS. We know these small adjustments to someone’s care can make all the difference between good and poor quality healthcare.
“We’re pleased that Wiltshire CCG has seen sense in awarding Richard the crucial adjustments he needs in his own home and we hope they are aware of the need for greater training in learning disability across all their staff.”
‘Granted the support that he needs’
Professor Peter Hindmarsh spoke on behalf of the Pituitary Foundation. He said: “It is good to hear that Mr Jackman has been granted the support that he needs. This is a special case because he has the combination of adrenal insufficiency and Asperger syndrome which makes the management of the former more difficult.
“As a consequence of the Asperger syndrome, Mr Jackman has a low somatic awareness that delays his ability to recognise the symptoms, which could precipitate a life-threatening adrenal crisis.
“This is a huge step forward for people with multiple complex conditions.”
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Published: 1 August 2018
