Health and Care Bill (Twentieth sitting)

Justin Madders Excerpts

Committee stage
Thursday 28th October 2021 Public Bill Committees

Brought up, and read the First time.

[Justin Madders (Ellesmere Port and Neston) (Lab)]

I beg to move, That the clause be read a Second time.

[The Chair]

With this it will be convenient to discuss new clause 40—Definition of carers—

“(1) The National Health Service Act 2006 is amended as follows.

(2) In section 275 (Interpretation) insert—

‘“carer” includes carers as defined by Section 10(3) and 10(9) of the Care Act 2014; parents of disabled children with reference to Section 97 of the Children and Families Act 2014; unpaid carers of disabled children as in Section 1 of the Carers (Recognition and Services) Act 1995; young carers with reference to Section 96 of the Children and Families Act 2014; and young carers with reference to Section 63 (6) and Section 63 (7) of the Care Act 2014.’”

This new clause inserts a definition of carers into the National Health Service Act 2006 which includes parent carers and young carers as well as adults caring for adults.

[Justin Madders]

It is a pleasure to see you in the Chair this morning, Mr Bone.

The NHS needs to have a core duty to have regard to carers and to promote their health and wellbeing. New clause 39 would put on a statutory footing the requirement for integrated care boards to collect information on carers and their families, and then to use it to develop strategies to promote their health and wellbeing. This is an attempt to ensure a strategic approach to the need for the NHS to demonstrate that it has considered carers in its policies and practice. In other words, all parts of the NHS would have to think carer.

The new clause would avoid situations arising in which carers had been omitted from consideration, for instance in hospital discharges, by ensuring proper care-proofing throughout the entire NHS. We believe that could help integration. Social care sees carers as an equal partner in care and very much part of the system, but sometimes there is a less favourable experience in the health service.

There would also be benefits to the NHS overall, through improved health and wellbeing, improved satisfaction with services, reduced admissions and readmissions, reduced crisis and reduced need. The new clause would avoid the significant omission of carers in recent guidance and improve the general approach to carers. It would also be good for NHS staff, one in three of whom couple working in the NHS with unpaid caring for family members and friends. Research shows increased job satisfaction when employers recognise carers, and the Minister will know how important it is to improve retention rates.

There is definitely an issue here. Surveys have consistently shown a problem, with 55% of carers saying that they agree or strongly agree with the statement, “I feel invisible to the NHS”. They are often providing more than 50 hours of care a week, which is more than a full-time job, and are essential to the NHS, yet that goes unrecognised. There are a range of other statistics on how carers feel about the recognition of their role; 56% agree or agree strongly with the statement, “Health services and professionals do not share information with me, even if it is essential for me to be able to care”. More than half are not involved in decisions on hospital discharge, two thirds of carers do not feel listened to by healthcare professionals about their willingness and ability to care, and a majority are not given enough information and advice when a person they care for is discharged from hospital to care for them safely. Most carers—60%—say that at the point of hospital discharge, they receive insufficient support to protect the health and wellbeing of the patient, or their own health.

Under the Health and Social Care Act 2012, carers have parity of esteem, and an equal right to receive information and advice and to have their needs considered. The Government accept that that is right for social care, so we think it should apply equally in healthcare. The NHS has very few responsibilities towards carers when compared with the social care sector. Carers were left out of the original Joint Committee on Vaccination and Immunisation decision on vaccination, even though they were in the green book. They were completely left out of the White Paper that underpinned this Bill; they were left out of two versions of the “Discharge to Assess” guidance; and they barely get a mention in integrated care partnership guidance—there is one reference in there to unpaid carers.

Several organisations are keen to support the approach set out in the new clause, including the Patients Association and the MS Society. The new clause would serve as an important marker in laying out the importance of carers, and it would help us work towards proper strategies to ensure that their value is recognised and that they are supported.

Turning to new clause 40, carers are mentioned in clauses 5 and 19, but are not defined anywhere. They could in theory include carers of any age. The new clause seeks to ensure absolute clarity about who the term “carer” refers to: it would refer to unpaid carers only—not volunteers or paid staff, but friends and family, commonly, who provide care. This keeps the definition consistent with other legislation, and includes parents of disabled children and, most importantly, young carers, who are particularly vulnerable to being forgotten. Young carers face more health inequalities than other children of the same age, and that persists into young adulthood. Every GP patient survey has shown that it is essential that it is made clear and explicit in legislation that provisions on carers include young carers.

In conclusion, we want to acknowledge the vital contribution that carers make, which can be quantified as running into billions of pounds. The NHS could not function without the daily support of unpaid carers, and during the pandemic the extra caring responsibilities that carers took on stopped the NHS being completely overwhelmed. These new clauses ensure carers’ needs will be at the heart of NHS decision making and polices. That is why we hope the Minister is sympathetic to them.

[Edward Argar]

New clauses 39 and 40 focus on carers. First, I join the shadow Minister, as I suspect all hon. Members wish to, in recognising and paying tribute to the enormous amount of work that carers, both formal and informal, do. We want to strengthen the system by which carers are supported, and ensure that those receiving care have choice and control over how they access services.

New clause 39 would create an obligation on integrated care boards to collect information, and understand and respond to the needs of carers with regard to their health and wellbeing. The Bill provides an opportunity to ensure the views of carers are properly embedded in integrated care boards. The Bill confers a duty on integrated care boards to promote the involvement of carers, along with those who access care and support, in decisions relating to the prevention, diagnosis and treatment of illness, and care. There are equivalent provisions for NHS England-commissioned services.

Furthermore, the joint strategic needs assessment, prepared by health and wellbeing boards, will continue to have to consider the needs of carers, and that will shape the strategy developed by the integrated care partnership and the plans of the ICB. That means the services commissioned through these routes in the area where a carer lives will have considered the impact on carers in that community. Carers UK has welcomed the clauses for recognising

“the crucial role carers play day in, day out supporting their relatives’ health”,

and it says the clauses

“give carers more of the visibility they need within health legislation.”

--- Later in debate ---

[Mary Kelly Foy]

For those who do not know, I should say that I was a carer for my severely disabled daughter for 27 years. Maria died six years ago; she suffered with cerebral palsy. I was very fortunate to be in a local authority that recognised the need for respite for carers. I was lucky enough to have a very generous package of six weeks, and that allowed me to engage with public life, have a social life and just recharge my batteries. However, other local authorities do not give such generous packages; it is a postcode lottery. When carers can no longer look after their loved one and that person has to be placed in social care, the cost to the public purse is huge.

On young carers, the issue is not just the caring role of young children. My children were classed as young carers, and the package they had was to enable them to enjoy social activities with other young people. They felt very left out of normal activities, because I was spending most of my time looking after Maria. It is very important that carers recognise that there is help out there, and help has to be consistent. As we know, local authorities have had their budgets cut massively, so what was once perhaps a gold star service for carers is down to a much lesser service.

A lot of carers I knew did not think they were carers and did not really want anything from the state. They said, “We’re just doing it because this is our loved one, and this is what we need to do.” However, the needs, health and wellbeing of unpaid carers are so important if we want them to continue doing the fantastic job that they do.

[Justin Madders]

I am grateful to my hon. Friend for relaying her family’s experience. She has articulated far better than I could why it is so important that we support carers, and young carers in particular.

I have listened to what the Minister said about the new clauses. I think he is keen to support this agenda, and there is clearly quite a lot of change happening in the Department over the next few months. We will keep an eye on how the issue of carers sits within that, and how ICPs work in practice, and will not push our new clauses to a vote. I beg to ask leave to withdraw the motion.

Clause, by leave, withdrawn.

New Clause 41

Review of implementation of NHS continuing healthcare by integrated care systems

“(1) Chapter 3 of Part 1 of the Health and Social Care Act 2008 (quality of health and social care) is amended as follows.

(2) After section 46A insert—

‘46B  Review and performance assessments: integrated care systems

The Commission must, each year—

(a) conduct a review of the implementation of NHS continuing healthcare by integrated care systems,

(b) assess the performance of these systems following the review, and

(c) publish a report of its assessment.’”—(Justin Madders.)

This new clause would require the review and assessment of NHS continuing healthcare systems.

Brought up, and read the First time.

[Justin Madders]

I beg to move, That the clause be read a Second time.

Continuing healthcare ought to be something that we do not need to think about in a truly integrated care system. Hopefully, when the next White Paper comes along, it will address some of our issues with continuing healthcare—no doubt the Minister will tell us whether that is correct.

We all know that continuing healthcare is a huge source of contention between the NHS and local authorities. Arguing about who pays for what is not productive or efficient, and of course it is always the patient who is stuck in the middle. I have numerous examples, as I am sure other hon. Members do, of constituents who have been wrangling, for years after the care was provided, about who is picking up the bill for what. It seems a highly bureaucratic, unfair and at times deeply distressing experience for the families involved.

It has been clear for decades that we are moving into a world where many people will have multiple long-term conditions, with both health and social care needs. The new clause was tabled with that in mind, and with the assistance of the Motor Neurone Disease Association. As one would expect, those with MND often fall into the CHC web. I cannot allow a reference to MND to pass without paying tribute to Rob Burrow and the many other magnificent campaigners who have put the spotlight on the challenges that those diagnosed with MND face. I had the privilege of knowing Rob when he was a professional sportsman, and he has taken equal vigour, determination and courage into this field. He has been an absolute star in campaigning on these issues.

Under the current complex and poorly understood rules, some qualify for free social care—in other words, the NHS pays for it, rather than the local authority—but it is for adults only, and in order to qualify there has to be an assessment by professionals of all a person’s needs. If the needs change, the eligibility can change, and of course there are endless arguments about what the needs are at any particular time. That demonstrates why the integration of care is very important and will probably be more efficient in the long run. Those in receipt of, or possibly eligible for, continuing healthcare should be fully involved in the assessment process and kept informed. Carers, who we have already discussed, and family members should also be consulted. There are the personal experience aspects of the process to look at, as well as the arguments about who pays for what.

The new clause accepts that we cannot fix all these things overnight. It suggests that in some cases someone should be responsible for ensuring that the system works properly in the interests of those with continuing needs. This is all part of the wider application of proper openness, and of transparency being the strongest and best form of good governance.

Clinical commissioning groups have a legal responsibility to meet the assessed health and care needs of every person in their area who is found eligible for continuing healthcare. Their responsibilities are laid out in the national framework and supporting guidance, but I am afraid there is extensive evidence that they do not always fulfil those responsibilities, and that the monitoring of delivery of continuing healthcare is inadequate. In 2018, a Public Accounts Committee inquiry on continuing healthcare found:

“NHS England is not adequately carrying out its responsibility to ensure CCGs are complying with the legal requirement to provide CHC to those that are eligible.”

It also found that

“there are limited assurance processes in place to ensure that eligibility decisions are consistent”,

and that existing measures

“may not go far enough to address the variation in performance”

across CCGs. These findings were echoed in a November 2020 report by the Parliamentary and Health Services Ombudsman, which warned that

“people continue to be seriously let down by failings in the way…healthcare is handled by CCGs.”

Patient organisations, represented collectively through the Continuing Healthcare Alliance, have reported a wide range of significant problems in CHC delivery, including CCGs not adhering to the national framework or associated guidance for assessment and care delivery, leading to significant inconsistency and variation across the country. Not enough data is collected about who receives continuing healthcare and multidisciplinary teams are frequently not used to conduct assessments, which leads to them sometimes being carried out by individuals with no knowledge of that person’s history or their medical condition. Care packages are frequently inadequate to assess needs, particularly when individuals require complex care or specialist care input. There is no effective system or process in place to monitor the quality of delivery across the country, to address that unwarranted variation and to take action when commissioners fail to live up to their legal responsibilities in respect of CHC.

We are seeking to address some of those issues through the new clause. We have what we would describe as an accountability gap, where there is no effective mechanism to monitor delivery of CHC and hold to account those who are meant to be responsible for delivering it. It goes without saying that people in receipt of CHC are sometimes the most vulnerable in the population, by definition, and it is surely unacceptable that a group of individuals continue to be let down by a failing system with no mechanism to identify and address those failings.

We hope that the new clause will address that issue and support better patient experience and outcomes with CHC. I do not intend to press it to a vote, but I would appreciate some responses from the Minister. The issue is not going to go away, so I would like his thoughts about the future of the whole idea of continuing healthcare and how we best monitor and ensure consistency and compliance throughout the country. Any thoughts on how we can make the system better would be most welcome.

[Edward Argar]

I am grateful to the hon. Gentleman and join him in paying tribute to the work of the MND Association and other campaigners who do so much to bring these issues to our attention, both as individual MPs and in debates such as this.

The new clause would impose a new duty on the Care Quality Commission to conduct a review and assess the performance of NHS continuing healthcare, or CHC, by integrated care systems each year. It would also require the CQC to publish a report of its assessment. Again, as with many of the hon. Gentleman’s proposals, I understand and have a degree of sympathy with the intention behind what he seeks to do with the new clause. It is right that clinical commissioning groups, as they are currently called, are held accountable for NHS continuing healthcare within their local health and social care economy. That will also be the case with the national move to integrated care boards, where the board will discharge those duties and be accountable for NHS continuing healthcare as part of its NHS commissioning responsibilities.

I am grateful to the hon. Gentleman for suggesting that the new clause is, in essence, a probing amendment to highlight the issue, because I am not convinced that it is necessarily the most effective way of doing that, although it certainly airs the issue in Committee. I reassure him that the Government share his view about the importance of ensuring adequate oversight in how health and social care services are delivered, including in this space.

First, by way of some reassurance, NHS England has a core role in overseeing ICBs in the exercise of their functions. The Bill requires NHS England to assess the performance of each ICB every year and ICBs are required to provide NHS England with their annual report, which will include oversight of NHS commissioning and thus, in that context, continuing healthcare.

In addition, as Members will be aware, we have debated an amendment to give the CQC a duty to assess integrated care systems at a system level. The intention is for these reviews to provide the public and the system with independent assurance of the work within the ICS and, in particular, the effectiveness of joined-up working and integration. They, too, will be a valuable way to improve the services provided. The scope would include NHS commissioning and NHS continuing healthcare. We also intend for the CQC to work closely with NHS England, which will be conducting its own assessment of integrated care boards. We therefore think that those are the most effective vehicles for that oversight.

However, I share the hon. Gentleman’s view and suspect that we will all, possibly with a degree of regularity, have constituency cases about continuing healthcare payments and whether the system is working efficiently or otherwise. Local healthcare systems must continue to focus on this and seek to do what they can to make the system as smooth and efficient as possible. We believe that the mechanisms in the Bill are an effective way of doing that, but that in no way implies that individual systems should stop looking at ways of continuing to improve that provision and the mechanism by which continuing healthcare funding is delivered to individuals.

[Justin Madders]

I am grateful to the Minister for his comments—it seems that the message has been received. Obviously, if the ambitions in the Bill to improve integration, collaboration and joint working are to be delivered, this will be one area where we would expect to see significant improvements. I have no doubt that we will return to this in future, but I beg to ask leave the withdraw the motion.

Clause, by leave, withdrawn.

New Clause 42

Alcohol product labelling

“The Secretary of State must by regulations make provision to ensure alcoholic drinks, as defined by the Department for Health and Social Care’s Low Alcohol Descriptors Guidance, published in 2018, or in future versions of that guidance, display—

(a) the Chief Medical Officers’ low risk drinking guidelines,

(b) a warning that is intended to inform the public of the danger of alcohol consumption,

(c) a warning that is intended to inform the public of the danger of alcohol consumption when pregnant,

(d) a warning that is intended to inform the public of the direct link between alcohol and cancer,

(e) a full list of ingredients and nutritional information.”—(Alex Norris.)

This new clause requires the Secretary of State to introduce secondary legislation on alcohol product labelling.

Brought up, and read the First time.