Martin Gascoigne has spent years sitting at kitchen tables with families who never asked for the job they now do around the clock.
As a brain injury case manager, his work is built around the client, the survivor of the injury, but he is quick to point out that the client is only ever half the story.
“When we are referred to a client, we always put in two people,” he explains, “one to support the client and one to support the family. It often amazes me how much informal care families provide.”
That support is practical as much as emotional.
Families get training, access to online care documents, and sight of the care plans themselves. Martin traces this back to legislation.
“It stems back to the 1995 Carers Act, which states that we ought to be looking out for the wellbeing of a carer, under the heading that a carer who is well supported provides a higher level of care.”
Because Neuro Case Management is CQC registered, everything comes with a protocol and documentation, giving families something to check their work against, and to point to later.
No such thing as twenty four hour care
“I always believe that my job could not be done without the family, without the informal carers,” Martin says.
He points to an argument that circulates within the industry, that there is really no such thing as genuine twenty four hour care, only degrees of who is covering the gaps.
The commercial reality is stark.
Martin explains: “The last case we had, it was twenty four hour care. We’re looking at about £19,700 a week.” That covers only the paid workforce: carers, team leaders, waking and sleeping cover, alongside physiotherapists, occupational therapists, dietitians, and speech and language therapists.
Set against that apparatus, Martin insists the family’s contribution is not a lesser, informal add on.
“They are as important as the high ranking therapists who we pay a lot of money to do the case.”
Paid support has edges, because most families cannot afford total coverage. “Then who’s going to pick that up? Well, the answer is the family or the carer,” Martin adds.
That is why every new client gets a family support worker alongside their own, and why families are invited into multidisciplinary team meetings to feed back on what they see at home.
When a parent is the one who is injured
The conversation turns to what happens when it is a parent who has been injured.
Martin describes an initial focus on rebuilding the bridge between parent and child.
Many survivors, once through rehabilitation, reach a stage where they can begin to have a meaningful role with their children again.
“It means they can work on their own self worth and confidence, and the children can have some interaction with the parent and a little bit of quality time with them.”
It can take a year or more, and Martin has noticed a pattern that repeats regardless of a child’s age.
Martin says: “The first and foremost reaction of any child, doesn’t matter whether five, six, seven, eight, nine years of age, is to actually parent the parent.”
He describes a case near Leicester that has stayed with him: a nine year old girl whose mother had been badly injured in a road collision.
Martin explains: “You could see the role reversal, whereby the nine year old girl became the mum and the thirty seven year old female became the daughter.”
He calls it fantastic to watch, in the sense that it showed exactly where the work needed to go.
The mother, he adds, carried real guilt about it, aware her daughter was losing pieces of her own childhood.
Rebalancing that dynamic, so the child can be a child again and the parent can find their footing, is, in Martin’s words, always the work.
He has also noticed children seem to accelerate a parent’s rehabilitation.
Martin says: “The second you bring the children into the hospital, you generally see a really big and marked difference in the parents’ ability to learn new skills.”
Survivors visibly redouble their efforts once their children are in the room. “They are a very big influence on the rehab of the parent,” Martin explains.
The economics of goodwill
“Every single person in the UK that is entitled to Carer’s Allowance gets eighty six pounds a week,” Martin says.
That figure barely scratches the surface of what many families actually do.
Martin says: “The last serious brain injury client I had, they had thirty two tablets a day. Every single one has to be lined up in the bottles or blister packs, and managed to within an inch of their life. That alone can take three or four hours a day.”
Stack medication, meal preparation, and therapy together, and a family can be at fifteen hours a day between them, before anyone has made a bed, done the washing, or gone shopping.
“It’s absolutely disgraceful what they’re paid for the role that they do,” Martin adds.
He offers a sharper illustration. One client, a grandmother and granddaughter, needed a weekly hospital appointment for six months. The bus there and back cost around £16 for the two of them, and food and drink at the hospital added another twenty.
“That one trip to hospital was costing £36. That’s half a Carer’s Allowance.”
Nobody else is coming
Martin is candid about why families carry so much of this.
Paid care work is itself precarious, typically paid at minimum wage, with no formal qualification structure and high staff turnover.
Those workers still do the essential, unglamorous work of a household, changing beds, ironing, the shop, cooking, cleaning. But when a shift ends, someone has to be there for everything else, and that someone is almost always family.
It leaves Martin with a firm conviction about where this conversation belongs within his profession.
“The topic of informal carers, family support, is absolutely essential.
“It’s vital, and without them, I just think it would collapse.
“All families, all informal carers, have a very important role to play when they are looking after their loved one. We cannot lose sight of that.”
