David writes in a personal capacity as a guest ...
A good friend of mine, Jane, looked after her late husband Steve (not their real names) for several years until his death. Steve had Parkinson’s and at one stage in his treatment, underwent deep brain surgery. Steve was in and out of A&E and hospitals with increasing regularity, as the disease progressed. Towards the end, Steve became very distressed whenever he had to stay in hospital. Jane then would spend long hours by his bed as she was the only person who could calm Steve and reassure him.
As a researcher, Jane was well used to taking copious notes, often verbatim notes, for her work. It became second nature to do the same whenever she was seeing doctors and therapists with Steve. On numerous occasions, often in the middle of the night or at weekends, she was able to consult her IPAD and explain to some junior doctor or exhausted nurse, some crucial details on Steve’s condition or treatment, that was not to be found in the official patient records. On several occasions, Jane’s detailed notes stopped incorrect medication or treatments. Her perceptive researcher observations of Steve’s changing condition and behaviours helped various healthcare professionals to understand these changes earlier. As an experienced manager as well as a researcher, Jane was also able to organise what she came to call “Team Steve” – family, friends, care-workers as well as various parts of the NHS – to support her and Steve as Steve sadly deteriorated and died.
Jane’s story and that of so many other carers that I met over my eight years as chair of Carers UK – and my own experience as an only son looking after my late parents – and also as someone whose own acquired disability has meant that I have periodically needed to be cared for too – have all confirmed my belief in the value of services like PKB. My only “build” would be to say “Patients – and their carers – know best!” I know that this is a build that Mohammad Al-Ubaydli and colleagues share too.
Similarly, I think we share a common vision of a more patient-centric NHS – and also of a more patient and their carers-centric NHS. In this spirit, I believe we need to see a more holistic approach to improving the health of patients and their carers. Fortunately, Jane – although often getting exhausted – did not get to a point beyond exhaustion where she could no longer look after Steve. Sadly, too many carers do – and then our health and care system faces a double, negative whammy: to care for the carer and the person they are caring for.
This is why the theme of this year’s annual Carers Week is so important: the need for sufficient funds, ring-fenced, to pay for regular respite care for carers. Research from the University of Exeter and elsewhere has shown the heavy, additional caring that many carers have had to take on during the COVID-19 pandemic and the lock-downs / sheltering that this has required. Two powerful Caring Behind Closed Doors research reports last year by Carers UK showed the extra hours that so many long-term, already long-hours carers were having to do as day-centres and care services closed or were severely curtailed.
It will be a real false economy if the Chancellor of the Exchequer does not release sufficient funds to pay for much needed Carer Breaks and respite care.
More broadly, as part of the #BuildBackBetter and Levelling Up agendas, we need to address the glaring inequalities that the pandemic has so dramatically revealed – the health inequalities, the markedly different life expectancies of rich and poor and so on. Joseph Rowntree Foundation research, for example, suggests that around half of the people living in poverty in the UK today are either disabled themselves or living with a disabled person.
I passionately believe that a key element of this is to take a much more joined-up approach to Health and Social Care – and that integral to doing this successfully, is to put patients/clients – and their circle of carers – front and centre. I was pleased to be part of an eclectic group of business people, social entrepreneurs, Third Sector and health & care professionals, convened under the auspices of the consultancy Jericho Chambers late last year. We held a series of round-tables and subsequently contributed to a magazine-style report on a more Patient-centric and more integrated approach to health and social care: Practising Connection – Public Health and The Surgery of the Future 4.0 – explores this and much more!
Download it here: https://hubs.ly/H0MSCd10
My contribution emphasised collaboration and collaborative commitments in social care – but the messages are applicable more broadly – and I hope are ones that PKB can endorse. Well done on joining in Carers Week 2021. All the best!
Prof David Grayson CBE is Emeritus Professor of Corporate Responsibility at the Cranfield University School of Management. He was chair of Carers UK 2013-2020 and is now chair-designate of the international, pan-disability charity Leonard Cheshire. He writes here in a personal capacity. www.DavidGrayson.net
Follow on twitter: @DavidGrayson_
For Carers Week this week we wanted to show our support for all the carers who provide unpaid care and support to a family member or friend who has a disability, illness, mental health condition, or who needs extra help as they grow older.
In the UK there are 6.5million people who are carers and this year Carers UK is taking the theme of Make Caring Visible and Valued to recognise their vital contribution, and it is so important that carers look after themselves. There is such a physical and mental pressure on them to be the strong support to their loved ones that sometimes the carer is forgotten about.
One way for a carer to manage their loved ones healthcare more easily is to ensure they have a personal health record. Patients Know Best helps to bring the healthcare information for the patient all into one place which the carer can see and, in some cases, manage (if the patient is unable to do so themselves). It means the carer is always notified when new information is sent into the patient’s record such as test results, medication updates, letters. They can share it with the relevant clinical teams that are involved in the patient’s care.
Patients Know Best will be making our carer stories visible this week via our social media platforms, look out for these and resources to support carers on our twitter, facebook and linkedin throughout the week.
If you want to find out more about about carers week and how you can support this please see https://www.carersweek.org/.