It is frequently said that family carers are one of the most valuable resources in the health and care sectors. But this is easily said and is often not reflected in the way that health and care services respond to carers’ needs. We will often talk, sometimes with irony, about people doing a job, ‘for the love of it’ rather than for a financial reward and this is literally what most of England’s family carers do. They often sacrifice their own earning potential and life aspirations to care for somebody they love. They co-ordinate multiple hospital appointments, prescription collections, overnight help, and assistance with dressing, feeding, toileting and washing. It’s physically and mentally hard work.
It is no surprise then that significant numbers of family carers go on to have significant physical and mental health problems themselves and that some of them get to the point where they feel unable to carry out their caring role any longer. Keeping a register of Carers in General Practice and offering them health checks is the right thing to do… but I have not met that many that have been offered this. Similarly every carer has the right to have their needs assessed by social care… but there is often a gulf between assessing and meeting need. Perhaps in the current financial climate this feels like a politically correct luxury but I believe that we cannot afford to neglect the needs of carers precisely because of the financial crisis. If we recognise and meet their needs then they are less likely to reach crisis and more likely to continue doing what they do ‘for the love of it’, but they will need short breaks, they will need sleep, they will need to be assisted to stay fit and healthy themselves, they will need networks to support them navigate the health and social care systems and they will need to be listened to. Family carers know better than many others what we need to do to redesign health and social care systems for better efficacy. We should formally listen to them… including those that are too busy caring to get to meetings. How about using the phone to seek people’s views?
How many carers have you met that feel that they have had to fight for recognition, fight for assistance, fight for benefits, and fight the system. What are we doing? We follow rules, we meet targets, we protect the public purse but we are short-sighted in what we are achieving.
My views are formed in part by talking to carers of people who are frail and elderly, who suffer with mental health problems, who have dementia, who have had strokes and numerous other conditions. They include children and young people as well as adults. They are in each of my GP clinics. But, I am a carer too for a 12 year old girl with drug resistant epilepsy who does not sleep at night because of seizures: she has a profound learning disability; has no verbal communication; needs help walking, dressing, toileting, feeding… everything really. I know the exhaustion and frustration first hand. I have had my own health problems, as has my wife. You will think that because I am a doctor I either don’t have the same needs as other carers or that I can just pay for all the care support that we as a family need. You will think that I will be an expert at navigating the system and getting health and social care to join up to meet my needs. You may also think that I do not know what it is like to feel at the end of my capacity to care and face the gruelling consideration that you will have to relinquish caring duties to the system. Well think again! And if these are my experiences how much more might they be those of people who are not professionals in health and social care. We urgently need to address how we meet the needs of carers.
Dr Dominic Slowie, National Clinical Director, NHS England
- Three into one doesn’t always go – A personal experience of caring (nhsiq.wordpress.com)
- This is not my mum (nhsiq.wordpress.com)
- A personal reflection on new beginnings after half a century of caring (nhsiq.wordpress.com)