Care Supporters

1st reading
Tuesday 6th June 2023 Commons Chamber

Motion for leave to bring in a Bill (Standing Order No. 23)

12:38

[Dan Carden (Liverpool, Walton) (Lab)]

I beg to move,

That leave be given to bring in a Bill to provide for a right for a user of health and care services to be accompanied by a care supporter; and for connected purposes.

The care of a loved one is not an optional extra; it is an absolutely central part of dignified care. Separation and isolation have a deeply harmful impact on individuals, but particularly on those who are vulnerable. For those who are approaching the end of life, the impact cannot be understated. My Bill seeks to recognise those fundamental points, and put them into law.

Throughout the pandemic, guidance proved consistently inadequate. It applied with levels of uncertainty and variability that led to a postcode lottery as separate settings interpreted it differently. There is a clear lack of recourse when guidance is applied incorrectly as well as a wide power imbalance between service users and care providers. Those problems will not be solved through further tweaks to guidance.

Past practice has shown that older and disabled people, those affected by dementia, stroke and other impairments, and those with a mental or physical disability are some of the most powerless people in our society. They often do not have the ability to challenge decisions made at care homes or in hospitals. In the worst circumstances—these are not uncommon—they cannot defend themselves against abuse, neglect or inhumane conditions.

The devastating impact of all of that affects not only those in receipt of care but their loved ones. Further, poor-quality data on visiting means that we cannot appreciate the true scale of the problem. Data does not capture where visits are allowed only for a short period of time, where young people are disallowed from visiting or where people cannot see parents, husbands or wives directly in their rooms. There is also a principle at stake: do we as a society give the right to state or private institutions—namely, hospitals and care homes—to deny us contact with family and loved ones because they are in receipt of their care, or do we believe that we should keep our right to maintain contact with loved ones regardless of health and care needs? I think it is obvious. I firmly believe that we should make a clear choice of the latter and enshrine that right in law in this House.

There is a dangerous hangover of restrictions from covid and a lack of urgency from the Government to change things. The need for the Bill is therefore as pivotal as it was during the pandemic.

Before I turn to the steps that I have taken to put this measure into law, I pay tribute to the determined efforts of campaigning organisations in this area: in particular, the Rights for Residents campaign group and the Relatives and Residents Association, which have merged to become Care Rights UK, and John’s Campaign. The work of Jenny Morrison, Diane Mayhew, Helen Wildbore, Julia Jones, Nicci Gerrard and Kate Meacock has been inspirational. They are all in the Public Gallery watching our proceedings. I also place on record my appreciation to the hon. Members for Chatham and Aylesford (Tracey Crouch) and for St Albans (Daisy Cooper) and the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts), who have supported the campaign from its origin. Quite simply, I would not be introducing the Bill if it were not for their collective efforts; I thank them all for that.

In November 2021, I tabled an amendment to the Health and Care Bill that aimed to guarantee visiting rights to hospitals and care homes. The amendments were not moved, but I hoped that the Department would take note. Many people across the country spent the winter of 2021 separated from those most important to them. In March 2022, we invited those affected to an event where they could share their experiences with parliamentarians. The testimonies that we heard were harrowing and the collective trauma was palpable. That powerful event left those present united in the view that a legal right was needed to secure the right of care users to nominate an individual to provide support or care in all circumstances.

Many at the event were disappointed by the following inaction from Government. None the less, following it, 60 Members signed a letter to the right hon. Member for Bromsgrove (Sajid Javid), who was at that point Secretary of State for Health and Social Care, pushing for a legal right to be put into law. We were again left disheartened by the Department’s response, which prescribed updated guidance as the solution to any problems. However, we pressed on.

In October last year, in response to our Backbench debate, the Minister for Social Care, the hon. Member for Faversham and Mid Kent (Helen Whately), stated that she did not

“consider the status quo acceptable”—[Official Report, 27 October 2022; Vol. 721, c. 494.]

and that she was “on the case.” Those words, with the promise of action, meant a lot to those affected. Campaign groups waited to see what shape that promised action would take and I trust the Minister for Social Care has been working on the issue. She attended our meeting this morning to meet campaigners. I say to her that we now need to see action.

It is important to remember that the denial of contact has not just taken place in care homes, but in hospitals too—I can account for that from personal experience. Therefore, any legislative response must address both sides of the health and social care system. I hope that those on the Treasury Bench will hear this point. It is not just colleagues in the House but more than 70 organisations across the sector who are pressing for action in this area: Mencap, the Alzheimer’s Society, Mind, Age UK, Care UK, Healthwatch—the list goes on. We have support from all parties across the House. In fact, I have witnessed few other issues on which there has been such universal agreement in the House.

There are only a few months left of this parliamentary Session. We expect the King’s Speech in autumn and a general election next year. It is clear that the time to act is now. Will the Government commit to legislating for a care supporter in the next King’s Speech? Will all major parties commit to putting this legal right into their manifestos? We have a Bill ready to be implemented. I thank Tom Gillie from Matrix Chambers and Carolin Ott from Leigh Day for their hugely valuable work on the draft legislation. Let me quickly outline how the Bill would operate in practice.

The Bill would place a duty on health and care providers to allow a service user to be accompanied by a care supporter. A care supporter is defined as a person nominated as such by the service user. Importantly, the right would attach to the service user, and only following their clear and informed consent. The Bill places a duty on providers to allow unrestricted in-person support from at least one essential care supporter, nominated by the service user. The Bill also provides safeguards for those exceptional circumstances in which the duty on providers would not apply. The Bill provides alternatives if the care supporter’s face-to-face access is entirely excluded. The provider would then have to take reasonable steps to facilitate contact by other means. Finally, the Bill would also provide means for appeal and proper enforcement, two measures that are currently almost impossible for those trying to maintain contact with their loved ones in care settings. As always, I stand ready to work with the Government on any steps that can be taken to make the Bill as effective as possible.

No one in this House was left untouched by the trauma of the coronavirus pandemic. We can all agree on the principle that whether it is the state, a privately run care home or a hospital, it does not have the right to separate us from our family and loved ones. We must now take the opportunity to learn from that trauma and bring in legislation.

Question put and agreed to.

Ordered,

That Dan Carden, Tracey Crouch, Daisy Cooper, Liz Saville Roberts, Marsha De Cordova, Caroline Lucas, Alicia Kearns, Hilary Benn, Maria Eagle, John Nicolson, Dame Caroline Dinenage and Steve Brine present the Bill.

Dan Carden accordingly presented the Bill.

Bill read the First time; to be read a Second time on Friday 24 November, and to be printed (Bill 318).