The Findlay Report
Communication is at the heart of it
About an hour after James Findlay died at the age of 85 from Motor Neurone Disease, family members including his four children and their partners and two grandchildren were sat in a side room at the hospital reflecting on the past few hours. Indeed, reflecting on the previous few months. There was general consensus that what had happened to James in the seven weeks between the diagnosis of MND and his death could not be left to stand. The impact on his wife, Joan was also considerable. As well as being her husband of 62 years he had also cared for her at home for nearly 8 years after her diagnosis of dementia that developed following a stroke. What happened to James had a bearing on what happened to her.
So why couldn’t the family let what happened to James stand? Because he did not receive the care that he should have done in every setting during the seven weeks whether at home, in a nursing home or in hospital. He did not receive the palliative care that should have been ready and waiting for him at diagnosis of MND. He should have been admitted to a hospice. But the trouble was, everything to do with his care was always too little, too late and playing catch-up all the way through punctuated by poor communications and coordination from all sides.
So while reflecting on what had happened, the family decided there was a need to write things down before they were forgotten. This led to the writing of The Findlay Report over a period of 3 months in early 2006 and was published by the family in April 2006. The report includes a day-to-day diary covering a four-month period of what was happening starting just before James’s diagnosis of MND and up to his death. It also includes the family’s recommendations as to how the whole experience could have been made so much better for all concerned.
The focus of the Findlay family following publication of The Findlay Report and the years since then has been to campaign to actively seek changes and improvements in the quality of care services, especially palliative care, not only where James and Joan lived but across the UK as well. An essential part of the changes involved an increased focus and commitment to drastic improvements in communications and co-ordination between all services involved in providing care, something that is still very relevant still. This includes effective communications with and involvement of family carers and the recognition that they should be treated as full partners of a care team.
The aim of The Findlay Report is not to point a finger at anyone or for it to be treated as a complaint to go through a complaints procedure, but rather as a means of prompting engagement with professionals whether in healthcare, social care, decision-makers, government officials, Ministers, Secretaries of State, academics and researchers or third sector organisations to name but a few.
A major recommendation in the report is worth mentioning here as it still rings bells today. This is the idea of a ‘conductor’ to be appointed as soon as a particular condition is suspected that could be life limiting. This conductor would lead the ‘orchestra’ of services across health and social care and other services and bring them into play when they are needed in order to produce a harmony of care. This is more than being a navigator. Having a navigator on the journey would not make the turmoil and difficulties of working through health and social care services any easier. A conductor would cut through and get to the nub of an issue and make necessary things happen in a timely manner and project manage the whole thing in conjunction with the individual and their family if they are involved in providing care. It doesn’t matter whether the conductor is drawn from health or social services or elsewhere but they would have to be given the authority to work across the services and be recognised as having that authority.
There are still debates to be had around the ‘conductor’ idea and other issues raised in The Findlay Report. You can take a read of it here