Contribution
It is a pleasure to serve under your chairship, Mrs Barker. I congratulate the hon. Member for Mid Sussex (Alison Bennett) on securing this very important debate.
Today, we are recognising the nearly 6 million parents, partners, siblings, friends and neighbours in the UK who, day in, day out, provide support, love, care and safety to some of the most vulnerable members of our society. The quiet and diligent contributions of unpaid carers is immeasurable and too often goes overlooked. The reality is that such care comes at a significant personal cost. The point of diagnosis is often as life-changing for the carer as it is for the patient, albeit in significantly different ways. I worry that our health and social care systems have become dependent on large sections of society providing care that the state would otherwise be expected to deliver, alongside full-time jobs and other commitments.
I want to focus on the role of unpaid cares in dementia care—an area of the system of which I have personal experience. Figures suggest that unpaid carers provide about half the total economic contribution to dementia care in the UK, amounting to an estimated £21.1 billion every year, yet there is too little support for those who provide those services.
My mum, brother and mother-in-law are all part of that statistic. Ten years ago, my father and father-in-law were diagnosed with dementia within a few months of each other. I know all too well the harsh reality that can follow such a diagnosis. Too often, families are handed a leaflet and are left to navigate the system. They are expected to become experts in dementia overnight. My family have become experts in spotting the signs of urinary tract infections and in understanding the risk of delirium. Every time delirium hits, my father’s dementia may accelerate, his condition may worsen and a new baseline becomes our new normal. We have learned the absolute imperative of keeping him out of hospital. As the Geller Commission has shown, dementia patients stay seven times longer in hospital than those with the same illness who do not have dementia.
Every person’s dementia journey is different. My father-in-law is awake much of the night, whereas my dad is fast asleep throughout the night, and some of the day as well. Every person’s care journey needs to be individually tailored, and I know that important steps are being taken to support local carers on a regional level. In Amber Valley, a small but dedicated team of nurses and healthcare professionals is working with the ICB to deliver the Derbyshire dementia strategy, which focuses on training, awareness and support for unpaid carers. Dementia UK installs Admiral nurses across the country, who are there to support the whole family, but there are too few of them.
Local commitments and initiatives such as the Admiral nurse scheme must be matched by national resources. As my own experience attests, accessing support remains one of the greatest challenges facing unpaid carers. One in seven are unaware of any sources of support, while 46% do not know who to contact to access social care. Given that bleak picture, is it any wonder that research suggests that 49% of carers report exhaustion or breakdown as the needs of the person they care for increase? It is often at that point that the consequences are felt across the NHS, with dementia patients needing to be admitted to hospital or A&E, or to have emergency GP appointments.
This debate is timely, as the forthcoming modern service framework for frailty and dementia presents a unique opportunity to embed measures that can right the wrongs and establish a care pathway for both those with dementia and their carers. I urge the Minister to listen to calls within the sector for the framework to include national standards for identifying and supporting unpaid dementia carers, and to ensure that it is implemented consistently across every postcode. Part of that work will involve intervening to facilitate better awareness of the support that is already available, including carers’ assessments, and ensuring that the results are followed up on.
Finally, will the Minister set out how his Department will ensure that the modern service framework enables health and social care to be joined up and share responsibility for proactive support for both patients and carers after a diagnosis of dementia?