My Lords, Amendment 113 focuses on carers and safe discharge for hospital patients. The amendment defines the patient and the carer and is focused on safeguarding the rights of unpaid carers when the person they care for is discharged from hospital. I am grateful for the support of the noble
Lord, Lord Young of Cookham, who is sadly unable to be in his place because he is isolating, the noble Baronesses, Lady Meacher and Lady Hollins, and all the other Peers who have expressed it. My thanks go also to Professor Luke Clements, professor of law and social justice at the University of Leeds, for his wise advice on the drafting of this amendment. I am also grateful to the Minister and his officials for the time and effort they have put in to meeting Peers and Carers UK—I declare an interest as its vice-president.
I continue to be amazed at what I am going to say next because, as it stands, the Bill revokes the Community Care (Delayed Discharges etc.) Act 2003, which includes a requirement to consult carers prior to discharge. Thus, for the first time, the rights of unpaid carers will be removed without being replaced by additional or improved rights. Many people, me included, have been fighting to get rights for carers recognised for over 30 years. We first achieved rights through Private Members’ Bills over several Parliaments and under Governments of all colours. No one could have been more delighted than I when these were later enshrined in government legislation such as the delayed discharges Act and the Care Act, but here there is no question of enhancing carers’ rights.
On the contrary, the Government’s own impact assessment of the Bill recognises that carers may be asked to take on additional hours of care, which could mean they have to reduce their hours of work or give up paid work entirely. It states that while the Government anticipate that in some cases
“carers may choose to … There is an expectation that unpaid carers might need to allocate more time to care for patients who are discharged from hospital earlier.”
I should point out that “may choose to” is a late addition to the impact statement. Originally, it said simply “There is an expectation that” carers may allocate more time, with no reference to choice at all.
Perhaps this may remind some of your Lordships that the Secretary of State for Health has said that families must be the first port of call for caring responsibilities. I always found that puzzling, since families always are the first port of call. Whatever reforms we make, the bulk of health and social care will continue to be provided by the so-called informal army of family, friends and neighbours. The contribution they make to the economy is now estimated at £193 billion annually—almost the cost of the NHS itself.
The point of hospital discharge is often the most vulnerable time for patients and carers. Carers UK research shows that more than half of carers were not involved in decisions about discharge, two-thirds were not listened to about their willingness or ability to provide care, and 60% received insufficient support to protect the health either of themselves or of the person being discharged. Anyone who speaks to a carer will hear horror stories about hospital discharge. I am reminded of Norman, a man in his late 70s and a carer for his wife who has multiple disabilities—Norman spoke to a group of your Lordships by Zoom recently. His wife went into hospital for a procedure, which was a relief to him as he himself had been diagnosed with cancer and was having chemotherapy. While he was actually hooked up receiving the chemo, he received a
call from the hospital saying that they were discharging his wife. He received no prior notice that she was ready to be discharged. “Okay,” said Norman, “but could you just wait till I get home to receive her?” “No,” was the reply, “she is already in the ambulance on her way home.” Norman’s response was not, “Well, please take her back again,” as I suspect many of us would have been tempted to say, but to ask the oncologist whether the drip that he was on could be speeded up so that he could get home quickly. As it was, he arrived home to find his wife had been left in a bed, frightened and alone. Many of your Lordships will have heard similar stories.
This amendment would place a duty on the NHS to ensure that carers are consulted and to check that they are willing and able to care, as well as ensuring that the patient is fit to be discharged—I emphasise not just medically fit but fit to be at home—and putting the right support in place. It would avoid the experience of another carer, who said, “We knew she was on her way home only when she was on hospital transport. We had to drop everything and rush around to try to get a commode just so she could go to the toilet when she got home.”
The Government suggest that rights in primary legislation will be replaced by statutory guidance. I have been assured of this by the Minister and officials, and I know they are sincere in the belief that this will be more than adequate. But guidance, however strongly worded, is not the same as having concrete rights in legislation that can be quoted and used. I cannot express how disappointed I and all who work with carers are that the Government are for the first time rowing back on the rights of carers, for which we have fought so hard.
With the leave of the House and at his request, I shall quote some of what the noble Lord, Lord Young of Cookham, would have said had he been able to be present. As your Lordships know, he is especially concerned about young carers. He says—