Our mother was re-admitted to the local County Hospital in September 2017 following a fall at home. She had only been back at home for a week, following a stroke and subsequent monitoring and rehabilitation, and the agreed care package and room arrangements self evidently failed – Mum was supposed to have a carer with her at all times.
On arrival in the hospital the overall situation rapidly deteriorated; Mum was in a ward without sufficient resources to care for her complex needs, there was little focus on working out what was wrong with her or making her better and she was placed under a Deprivation of Liberty Order. The institutional disregard for us, her family, hardened, and we felt that we were fighting a rear guard action to get the best for Mum. The Social Services lead was the prime mover in trying to control the way forward for Mum, dismissive of and sceptical about our input, with the ward staff complicit and often hostile. We were out of our depth, unclear on the rules and norms, trying to care and represent at the same time – it felt that we were without allies and woefully short of skills and knowledge.
Following a strong recommendation from a local (to me) continuing healthcare advocate, I contacted Stephanie Ford of Care Necessities and explained our situation. Stephanie agreed to act as Mum’s advocate and to support us in our endeavours to get the best for her.
Stephanie started by stabilising the situation with Social Services, the hospital and the County Solicitor, reasserting the rights of the family to be involved and making sure that the norms of best practice were being applied. She acted as our advocate and reservoir of expertise and support as we sought to find a way forward in meeting the challenging hospital discharge criteria (two carers at all times, living in) and to prepare for continuing healthcare funding battles that were sure to come. Mum wanted to be at home, and this was achieved in late December 2017.
With Mum at home, Stephanie advised us on how to manage challenges from healthcare professionals while gathering evidence for future use. She provided bespoke record forms to make sure that we, and the carers, captured the most valuable evidence, made sense of and packaged the evidence and then presented the case for us at the multi disciplinary review of Mum’s case. Stephanie stayed in close support as we dealt with subsequent demands for new data, and was as pleased as we were when Mum was declared eligible for Continuing Healthcare.
Getting money from the NHS proved even harder than proving eligibility. The local Care Commissioning Group failed to follow its own processes, eventually made an offer that covered only part of the eligible time window, and sought to limit its liability. With Stephanie’s support we fought through and eventually received the first payment covering a quarter of the time in question. The money was received four days after Mum died, over thirteen months after she was eligible to receive funding, and after she had used all of her savings.
After that payment the CCG was still trying to evade its duty to pay any more, and seeking, at worst, to reduce the cost – they were looking for ways out. Stephanie wrote, on our behalf, a detailed and direct letter to the CCG exposing all of the errors in law, failure to follow their own process and decency over the previous thirteen and a half months, and demanding full redress. Her letter triggered a fulsome apology, recognition of multiple failures and promise of repayment of all costs for Mum’s care. It is now two months since repayment was promised, and we have nothing in hand, but we still have Stephanie behind us.
The challenge and frustration of dealing, for the first time and with a very ill parent, with NHS Continuing Healthcare in full denial was outside our experience and worst expectations. Although my brother is a retired Consultant Anaesthetist and we are all used to having to fight our corner, we were ill fitted by available time and expertise to achieve all that was needed for Mum in what is a very specialist, complex and, arguably, deliberately opaque area. Stephanie was a stellar advocate; supported us throughout the process and provided the knowledge, drive and empathy to deliver the best possible solution all round. She has earned our respect and gratitude.
Thank you Stephanie.
Mr T.