Contact in Care Settings

Liz Saville Roberts Excerpts

Thursday 27th October 2022 Commons Chamber

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

I beg to move,

That this House has considered the matter of guaranteeing the right to maintain contact in care settings.

After much delay due to circumstances out of our hands, I am grateful that we now have the opportunity in this Chamber to debate this incredibly important issue. I thank the Backbench Business Committee for its efforts in finding us time to speak about this in the Chamber today. I also want to extend my gratitude 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) for their steadfast and resolute support and advocacy on this matter throughout.

People across the United Kingdom are still having to face their time in hospitals, care homes and other care settings completely alone and detached from the people they hold dearest. They are some of the most vulnerable and frail people in our society; some of them will be nearing the end of their lives. The devastating impact of this isolation and of denying contact with loved ones affects those in receipt of care and also their loved ones. It is difficult to imagine, unless we have personal experience, the anguish, pain and stress of not knowing when we will next see our loved one—our husband, wife, mother or father—and repeatedly asking ourselves, “Are they okay? Are they comfortable? Do they even know that I care?”

That same anguish and pain is experienced by the individual receiving care, not understanding why family or loved ones are not able to visit. Shirley from my constituency said:

“My father forgot I was his daughter during the period I was unable to visit. When I was finally able to visit, my dad was unrecognisable. It broke my heart. He has never recovered.”

The support and care given by partners and by parents and children is not an optional extra: contact with loved ones is absolutely vital to dignified care. This point was also made by the 363 members of the public who in the last few days alone provided written evidence for this debate, and I want to thank them for their brave contributions and the Chamber engagement team for collecting them.

Throughout today’s debate we will hear further personal experiences from across the Chamber, but I hope the House will not mind if I take a moment to talk about my own family’s experience last year. My mother and brother contributed a few words, too, and I am grateful to have the opportunity in the Chamber to express them.

My father, Mike, died last year: he was diagnosed with lung cancer in February and died in December. Like many people undergoing cancer treatment, one evening he suddenly became unresponsive and we had to rush him to A&E. At the hospital, it was confirmed that he had sepsis, and he was therefore isolated in a side room on the A&E ward, which was overrun with patients on beds or trollies in the corridor. My dad was in an A&E side room for three days, during which time he did not receive any hot food, he was not showered or washed, nor assisted to change his clothes, and he was unable to get help to go to the toilet. Instead, he was given cardboard containers which were often left full on his bed table for days despite regular requests that they be taken away and replaced. Throughout this time, he had no means of contacting us, because there was no phone signal where he was and he could not access the wi-fi despite repeated attempts.

There were other occasions: once he had to be moved to a ward, when he was left with his emergency buzzer out of his reach; and one time he could not breathe and began to panic, and he phoned my mum, who was unable to get through to the ward by phone and therefore rushed to the hospital. After these experiences he told us that he had felt so lonely and neglected, and unable to alert anyone to his basic needs, and my dad was a man who never liked to make a fuss.

The hospital policy at the time was that visitors were only allowed for patients in end of life care. The NHS website defines that as follows:

“End of life care is support for people who are in the last months or years of their life.

End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences and take these into account as they work with you to plan your care.

They should also support your family, carers or other people who are important to you.”

However, at the time, the hospital defined end of life care differently and restricted visiting rights to those patients who were “actively dying”. In other words, they were displaying the physical symptoms of dying.

My mum said:

“This meant that instead of being able to focus on caring and supporting my husband through his final weeks, we had to battle with the hospital to see him. The trauma of my husband’s death—and in particular the neglect he experienced in his final weeks of life—remain with me. It is almost exactly one year since Mike was admitted to hospital, where he spent the last month of his life, and I am still overwhelmed each time I attempt to talk about what he went through.”

I turn to the words of one dementia sufferer, who said:

“I’d forget that I had an allergy, but my daughter was there to correct me. If alone, I would simply have said I didn’t have an allergy—that could be so dangerous.”

The lack of input from the family and friends of those receiving care—the people who know them best—leads to much worse outcomes.

In March, we invited affected constituents to an event where they could share their experiences with parliamentarians on the estate. The testimonies that we heard were harrowing, and the collective trauma was palpable. To give just one of the contributions from that day:

“Sitting with my mother’s body was the longest time I had been allowed to spend with her since she had entered the care home 16 months before.”

That powerful event left those hon. Members 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 of us at the event were disappointed by the response of the Government and the Minister for Care.

Since the event, 60 Members sent a letter to the right hon. Member for Bromsgrove (Sajid Javid), who at that point was Secretary of State for Health and Social Care, pushing for codification—a legal right to be put into law. We were again left disheartened by the Minister’s response. While we were told that the Government were committed to ensuring that care home residents had access to the support and companionship that loved ones bring, there was no answer to our request for a meeting or consideration of our proposals. Understandably, the campaign groups felt ignored once more. I hope that the Minister will not leave those affected feeling the same way.

The problem is not exclusive to the coronavirus pandemic. There are still rigid restrictions on visiting as well as shocking instances of denying contact. Another of my constituents reported:

“My family and I have never been allowed into the care home that he now resides in. Restrictions have caused unnecessary stress and anxiety to my family and I.”

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

The hon. Member is making an excellent speech. Does he agree that now is exactly the time that we should be considering this matter, because, as we go into the winter, many care settings will be considering the option of imposing restrictions, and guidance alone has proven insufficient? That is among the lessons that we should have learned over the last two years. The Government should now be acting.

[Dan Carden]

I am grateful to the right hon. Member for that intervention. The Government have previously pointed to guidance as a defence against bad practice, and we have enough evidence to show that that is not good enough. Indeed, while there are excellent examples of good practice across the sector, significant levels of uncertainty and variability throughout the system seriously undermine the rights of individuals. The guidance leads to a postcode lottery as separate settings interpret guidance differently.

That difference is compounded by the response of the Care Quality Commission, which is an organisation that many have had difficult and negative interactions with. The Government encourage those affected to report care providers who do not meet the guidance to the CQC, but by then it may be too late. The poor response is not because the CQC ignores complainants, although there was evidence of that as well, but that it simply does not have the proper powers or data to support people who have their access rights compromised. In the CQC’s own words:

“We do not have the power to require care homes to report live data on levels of visiting, neither do we have the power to take action against those care homes that are not reporting changes to their visiting status to us.”

The CQC, which regulates all health and care services in England, bases its enforcement action on the capacity tracker. However, providers are not obligated to use the tool—they are merely encouraged. That has led to very little, if any, clarity on the true extent of the problem.

By comparison, in Scotland, the National Care Service (Scotland) Bill, places a duty on Ministers to require providers to comply with any direction made regarding visiting. What assessment has the Department made of the Bill and would it be minded to introduce similar provision in England? The evidence suggests that the only way to guarantee contact in care settings is a legal right to an essential care supporter. An essential care supporter would be able to visit or accompany a person in any health and care setting to help communicate their wishes and needs, and to ensure they receive the correct care. If the Government are serious about their support for these calls, if they are serious about acting in the interests of families and loved ones, if they are serious about balancing clinical restrictions with the impact of restrictions on residents’ health and human rights, then I ask the Minister to immediately consider how to put that into law.

I cannot think of any other issue that commands such unanimous cross-party support. Indeed, as my right hon. Friend the Member for Leeds Central (Hilary Benn), who I know supports these calls wholeheartedly, said at our meeting in Parliament:

“How can anyone be opposed to this?”

There are also 35 organisations in this area who support these calls, including Mind, Mencap, Disability Rights UK and Dementia UK. The new Secretary of State for Health and Social Care, the right hon. Member for North East Cambridgeshire (Steve Barclay), has previously signalled support for this right. We are ready and willing to work with the Government to make this legal right a reality as swiftly as possible. The Joint Committee on Human Rights has also been unequivocal in its call for legislation in this area. In its report from July this year, “Protecting human rights in care settings” it stated:

“The Government must introduce legislation to secure to care users the right to nominate one or more individuals to visit and to provide support or care in all circumstances, subject to the same infection prevention and control rules as care staff.”

We have not yet had a response from the Government to that report, so may I ask the Government Minister to take that up? We have opportunities in the draft Mental Health Reform Bill and the Bill of Rights to codify this right. The Government could also introduce secondary legislation, which I know campaigners are in favour of. Will the Minister meet me, others and the affected families as soon as possible to discuss making this right as strong and effective as possible? The Government have previously said that legislative options are under active consideration, so please can the Government give much more specific detail on what that actually means?

I want to finish by paying tribute to the tireless campaigning of organisations in this area, in particular the Rights for Residents campaign group, the Relatives and Residents Association and John’s Campaign. The work of Jenny Morrison, Diane Mayhew, Helen Wildbore, Julia Jones, Nicci Gerrard and Kate Meacock has been absolutely inspirational, and they are all in the Public Gallery today watching this debate. Their dedication to this campaign has been phenomenal. I pay tribute to them. In the face of immense loss and personal grief, they have shown incredible selflessness and service to guarantee that no other family member will have to endure the pain of being denied contact again.

Families do not deserve any further delay; they have suffered enough. We must learn from this trauma and bring in legislation. I hope that when the Minister rises to give the Government’s response, she will agree and set out the steps that we can take to get this right.

--- Later in debate ---

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Diolch yn fawr iawn, Lefarydd.

My mother Nancy had a stroke sometime between Christmas eve and Christmas day at the close of 2020. There was no warning, no time to prepare for this catastrophic event. Overnight she lost her autonomy, her independence and her agency in her own life. She went into the local district hospital and was transferred from there at the beginning of January 2021 to a community hospital specialising in stroke rehabilitation. She remained there until the end of that February. She came back to live with us for a couple of months, with twice daily home carers, while I, her only child, was still able to vote here and speak in debates without having to be physically present in the House of Commons. She had to move into residential care because the period when I could balance caring and parliamentary duties came to an end.

Last November she had a fall and knocked her head. The anti-stroke medication resulted in bleeding on her brain. She was discharged from hospital back to the residential home at very short notice. Just before Christmas she fell again and broke her hip. She died in hospital four weeks later. These are the bald facts of the event. It was my mother’s misfortune to be old and in need of clinical services during the first covid winter. It was the misfortune of all of us as a family that my mother fell ill at a time when covid infection control demanded the absolute isolation of stroke patients. Many of the key workers with whom we interacted over those 13 months were extraordinary.

During the last month of my mother’s life, dementia specialist nurse Delyth Fon Thomas put me in contact with John’s Campaign. She explained to me that, in the last month of my mother’s life, family contact was a right rather than an optional favour. She was the first person in authority to mention that, and she put me in contact with Julia of John’s Campaign, who is, I am glad to say, with other campaigners here in the Public Gallery.

Look up the long list of hospitals and other organisations that have signed up to John’s Campaign. They recognise that a key family member is more than a visitor—they are a carer as much as anyone on the payroll. But, I say to Members, try to get that information volunteered to you, try to find out what your rights are, because they are not given to you on a plate. People such as Delyth confounded the cliché of monolithic public sector organisations, which may well prioritise institutional interests and risk aversion to the detriment of those services that we trust them with providing. I think that, as private individuals, many people will have had that experience.

None the less, despite Delyth’s help, I only touched my mother’s hand once during the critical six weeks after her first stroke. Yes, we could arrange to speak to her through a glass window as she sat in a hospital stairwell and we stood outside in the car park, peering in. She could not hear us—incidentally, her hearing aid had been kept in a cabinet all the while and the batteries had run out. Yes, we could phone and arrange to speak over an iPad, but she could not hear us; she could not understand us. There were no hugs.

Health authority infection policy vetoed family bonds of love as a health hazard to be minimised. Of course, at the onset of covid, we had to adapt and learn quickly about how to cope with an unfamiliar, life-threatening and highly infectious virus. We put in place measures such as lockdowns and visiting restrictions at hospitals and care homes, because that was the best that we could do; that is all we knew back in 2020. We had to learn as we went along, but have we truly learned the most important lesson of all? Treating the elderly and people with dementia as units of flesh and bone by meeting the barest minimum of their physical needs is wrong. We are social animals: take away our social support and we fail to thrive. Denying family contact causes immediate welfare harm to patients and longer-term harm to family members.

That is the context in which we must apply the abstract terminology of legislation: the Equality Act 2010 recognises the basic principle that the needs of disabled people should be assessed and reasonable adjustments made to meet those needs. People with dementia and cognitive impairments are disabled. Then there is the matter of human rights, which have been touched on. Article 2 of the European convention on human rights places an obligation on the state to secure the right to life. Article 8 protects the right to private and family life, but how these are balanced in care settings is critical, and how we shift that balance as we move along is also critical. It is also surprising that the Human Rights Act 1998 applies only to publicly funded residents in care homes.

This evidently unjust inconsistency is why the Government must step in. Why should the owners of private care homes, especially in England where local authority care is far less available than in Wales, be able to make such immense decisions, and possibly prioritise convenience over residents’ and families’ rights? Indeed, if we start from the point of view of people in need of care, the care setting itself should not depend on whether it is in the public or the private sector. If the individual has a right, that right goes with them throughout their lives—whether they be in hospital, at home or in residential or nursing care. A right is not a right if its only guard dog is guidance.

[Sir Geoffrey Clifton-Brown (The Cotswolds) (Con)]

On a point of order, Mr Deputy Speaker. I made a speech in the previous debate on the national food strategy and food security and I inadvertently forgot to declare my interest in the Register of Members’ Financial Interests as a farmer and a Fellow of the Royal Institution of Chartered Surveyors, for which I wish to apologise to this House and to put the record straight.