Social Care and the Role of Carers

Baroness Hollins Excerpts

Thursday 24th June 2021 Lords Chamber

[Baroness Hollins (CB) [V]]

My Lords, I remind the House of my interests as chairperson of the independent care, education and treatment review process for people with a learning disability or autism in in-patient settings, as president of the Royal College of Occupational Therapists, and as a carer for my adult son.

There is a growing number of households of elderly carers who may have their own health and support needs but who still support adult children with a learning disability, themselves approaching retirement age. Mencap’s survey of such carers during the pandemic found that the majority experienced significant reductions in social care, including a lack of continuity of social worker input. Knowing that parents are ageing is a reason to make plans and to have good support in place, rather than waiting for a crisis. Too many crisis admissions to residential care or hospital occur after a last surviving parent has died or following some other trauma.

Last week, some families shared their stories in a report, Tea, Smiles and Empty Promises, to mark the 10th anniversary of the BBC “Panorama” documentary which revealed the abuse and neglect of people with a learning disability and autistic people at Winterbourne View hospital. Tens of thousands of pounds are spent detaining people such as these in hospital, rather than using the money to provide community-based support. Working-aged disabled adults account for half the total social care spend in England, and of this, learning disability accounts for one-third. Is the money being spent well? The answer is mostly no.

Far too often, our social care system ignores the real needs of disabled adults of working age for skilled support to live an ordinary and decent life. They absolutely do not need to be locked up, warehoused, or kept out of sight. This debate is not just about who should pay but about the very nature and quality of the support provided.

Social care exists for a purpose: to provide personalised care that ensures well-being in line with the Care Act 2014. When it is good, it is very good, but a system based on crisis management is a failing one. Of the workforce, currently 604,000 of the 1.5 million care workers in this country are paid less than the real living wage—that is nearly half. The social care people plan framework, launched at a major summit with politicians from all parties, this afternoon, argues for a real living wage for care staff, a national register and nationally prescribed training. Does the Minister agree? I believe that the case for a social care people plan to mirror the one already in the NHS for a similar sized workforce is unassailable. The Royal College of Occupational Therapists agrees.

NHS Digital: Primary Care Medical Records

Baroness Hollins Excerpts

Tuesday 8th June 2021 Lords Chamber

[Lord Bethell (Con)]

I am grateful for the noble Lord’s anecdote. It is no coincidence that he got the text yesterday. We have energetically promoted this opportunity to patients and we are grateful to those who have engaged. He is entirely right. Patient data played a critical role in the development of the shielding list during Covid, in the recovery clinical trials programme and in the vaccine priority list. Clinical data is essential for patient safety. That is why we are modernising the system by which we access it.

[Baroness Hollins (CB) [V]]

My Lords, the choice on the opt-out preference form is either:

“I do not allow my identifiable patient data to be shared outside of the GP practice for purposes except my own care”,


or:

“I do allow my identifiable patient data to be shared outside of the GP practice for purposes beyond my own care.”


The big question is: what is identifiable? For some people with disability, mental health and/or trauma histories, data might be easily identifiable. I knew nothing of this until last week. I await with interest the noble Lord’s reply.

[Lord Bethell (Con)]

The nature of the data is very explicitly described in the documents that the noble Baroness will have referred to. If she likes, I would be very happy to send her a full set of details. Of course, many patients have engaged with the process and, like the noble Lord, Lord Young, have made the wise decision to remain enrolled in the system.

Covid-19

Baroness Hollins Excerpts

Wednesday 26th May 2021 Lords Chamber

[Lord Bethell (Con)]

My Lords, the noble Baroness alludes to a dilemma that we face. It is not possible to organise surge testing and have pinpoint outbreak management in 120 different areas. That is just too many and our resources do not stretch to that. Many of the outbreaks are substantial clusters. Sorry—let me phrase that better. There is a small number of very substantial clusters in the towns and cities of which noble Lords will be aware. That is where we are focusing the surge testing and surge vaccination. In the other areas, we are working with DPHs to ensure that they know the best way to target the particular behaviours of the India 2. That means that it has very high transmissibility, which requires an extremely quick reaction to school and workplace outbreaks, and within specific communities. That kind of briefing and guidance has been channelled through the Chief Medical Officer’s department and the kinds of infrastructure that I described in my answers to previous questions. The response has been extremely strong and I hope we are making some impact on the spread of the India virus, but we remain extremely vigilant.

[Baroness Hollins (CB)]

My Lords, my question is about the implementation of quarantine regulations. How many travellers have been required to repeat the 10 days required in a designated quarantine hotel for a second 10-day period, with or without a positive Covid test? What appeal arrangements are in place because public guidance does not mention any? Is there any risk of exploitation?

Covid-19: Resuscitation Orders

Baroness Hollins Excerpts

Wednesday 24th March 2021 Lords Chamber

[Baroness Hollins (CB) [V]]

My Lords, given the significantly higher number of excess deaths among people with learning disabilities last year, will the Minister commit to finding out what proportion of those deaths were associated with DNACPRs? Does he agree that the use of blanket DNACPRs for people with learning disabilities is an indication of the extent of the lack of confidence and competence among healthcare staff to accommodate their needs, and adds to the urgent need to introduce the Oliver McGowan mandatory training currently being piloted? A timetable for the widespread introduction of that training would be very welcome.

[The Lord Privy Seal (Baroness Evans of Bowes Park) (Con)]

My Lords, I am afraid that we are having questions that are far too long. Can people please keep their questions brief?

Health and Social Care Update

Baroness Hollins Excerpts

Monday 22nd March 2021 Lords Chamber

[Lord Bethell (Con)]

My noble friend is entirely right: this is a considerable dilemma not just for the Government, but for everyone. We in the UK have an enormously valuable project in our vaccination programme. Who does not relish the potential freedom from this horrible disease that it gives us? Yet we need only look overseas to see infection rates rising and the variants of concern spreading. The bottom line is that we do not know the impact of the variants of concern on the vaccine. Anyone who says they do for sure is simply not representing the truth. We have to be patient and figure out and fully understand the threat from the variants of concern. When we have that information, we can make a pragmatic, sensible and informed decision on foreign travel, as the Prime Minister has promised.

[Baroness Hollins (CB) [V]]

My Lords, I am so pleased that all people with learning disabilities who are known to their GP are now in either group 4 or 6 for vaccination. Will the noble Lord commit to reporting on the take-up of Covid immunisation for people on the register, both nationally and locally? Will he also report on the implementation of visiting policies for people with learning disabilities in both supported living and residential settings, and whether those residents are able to choose their one visitor?

[Lord Bethell (Con)]

Those were two extremely thoughtful and well-informed questions. I do not have the statistics at my fingertips, but I would be glad to go back to the department and write to the noble Baroness with the information she has asked for.

Covid-19: Vaccination Programme

Baroness Hollins Excerpts

Wednesday 24th February 2021 Lords Chamber

[Baroness Hollins (CB) [V]]

My Lords, I welcome today’s announcement that all people with a learning disability on their GP learning disability register will now be included in group 6. However, we know that these registers are incomplete. How will the Government and the NHS ensure that those in England not currently on the register can be added so that they can be offered a vaccine too? Will the Minister confirm that family carers and home carers will be offered vaccination at the same time?

[Lord Bethell (Con)]

We have to work with what we have. The existing register, while not perfect, is the tool that we have for our task. GPs had been encouraged to update registers in advance of the vaccine, as we had several months of knowing that it was coming. I understand that considerable work has gone into that. With regard to carers, my understanding is that they are not currently included in the clarification that came out today, but I am happy to confirm that point with her.

Covid-19 Update

Baroness Hollins Excerpts

Thursday 4th February 2021 Lords Chamber

[Lord Bethell (Con)]

My Lords, I am grateful for the reminder from the noble Baroness. The analysis we have done of the Pfizer vaccine, and indeed of all vaccines, is extremely encouraging and the impact it has on the body’s antibody production rate is profound. In fact, for many vaccines it might be that a longer delay, of 12 weeks, to the second dose might have an improved impact on the body. The second dose is really important for longevity rather than for efficacy, and therefore, with the data we have at the moment, we do not have any plans to change the pace of the rollout, but we are making sure in absolute terms that the second dose is delivered to all those who have had a first dose, promptly and on time.

[Baroness Hollins (CB) [V]]

My Lords, the Minister repeated the statement earlier that said that all care home residents and staff have been offered vaccination, but this is not true for homes for people with learning disabilities. I was pleased to hear in the Minister’s reply to the noble Baroness, Lady Andrews, that the JCVI is still considering priorities for groups 5 and 6. Is the Minister aware that 80% of the deaths of people with learning disabilities in England were Covid-19 related in the week ending 22 January, compared with 45% of the general population? Does he anticipate that all people with learning disabilities will be included in group 5 or 6?

[Lord Bethell (Con)]

My Lords, I have taken the noble Baroness’s insight on this to the department where it is being plugged into the Vaccine Taskforce and the JCVI. Her championship of this cause is to be lauded. The statistic she just cited is heart-rending, and I will definitely return to the department this afternoon and follow up, to ensure that it is being taken seriously.

Social Care Funding (EAC Report)

Baroness Hollins Excerpts

Thursday 28th January 2021 Grand Committee

[Baroness Hollins (CB) [V]]

My Lords, I refer to my interests in the register. I thank the noble Lord, Lord Forsyth, for steering this excellent report. We can no longer ignore the impact that chronic underfunding and political indecision about adult social care are having on the well-being of individuals—something the pandemic has shone a spotlight on.

First, I question whether it is possible sensibly to debate social care for older people at the same time as social care for working-age disabled adults, who are far too often overlooked in debates on social care reform. Perhaps older adults have more political clout. It does not make sense to ignore or exclude a group which, according to the Association of Directors of Adult Social Services, accounts for 64% of demographic pressures on the sector and approximately half of social care spending in England—I know that the noble Lord referred to this.

Secondly, we need a two-way collaboration between health and social care: interdependence rather than dependence. The NHS cures us of disease and mends bones; social care helps to cure loneliness, mends social inequalities and unlocks potential. For social care to achieve its mission, it must have personal fulfilment and independent living at its heart. For many working-age disabled adults, social care is not personal care but rather the support to develop skills such as cooking and maintaining a home so that they are able to make meaningful decisions about how to live their life and to grow in confidence, perhaps to find employment, to make friends and to play an active role in the community. Proposals that include funding mechanisms based on housing wealth, assets, floors, caps and insurance seem to forget about the impact that such models could have on working-age disabled adults. While free personal care would undoubtedly benefit many people, one concern is that underfunding could facilitate a drift towards the medicalisation of social care, where individuals’ horizons are reduced and the goal of the system becomes merely to keep someone alive.

Thirdly, social care must have a better-paid and trained professional workforce, with a meaningful career structure to reward dedicated staff and producing a talent pipeline that creates an avenue for experienced staff to develop, become mentors and pass on their knowledge and skills to a new generation. We know the problems that plague the workforce, including that some people take short-term jobs to fill employment gaps, but it is mainly that low pay and poor career progression lead to high turnover and poor retention. With more than 100,000 vacancies, we cannot underestimate the challenge. These problems are not new. In 2016, I chaired an expert reference group for Health Education England on building a direct support workforce to deliver the transforming care programme for people with a learning disability and/or autism who display behaviour described as challenging. Without adequate support and effective collaboration between social care and community mental health services, that group faces a real risk of ending up in inappropriate in-patient units at huge cost, both personal and financial. Of course, many people post Covid will want to avoid congregate care settings. This will need a different approach to career development and career structures.

The social care sector needs an immediate injection of funding to help improve pay and stabilise the sector, as many have already said, as well as reform in the ways that I have briefly outlined with respect to working-age disabled adults.

[The Deputy Chairman of Committees (Lord Bates) (Con)]

Before I call the noble Lord, Lord Taylor, I remind all participating remotely to keep their microphones on mute unless they are called to speak.

Vaccine Rollout

Baroness Hollins Excerpts

Monday 25th January 2021 Lords Chamber

[Lord Bethell (Con)]

My Lords, I assure the noble Baroness that it is communicated on the front line immediately. I did not have a valid NHS number until a week ago: it took me a couple of days to get one, but it was provided extremely promptly. I am hopeful that anyone who is lacking an NHS number can get one extremely quickly when they apply.

[Baroness Hollins (CB) [V]]

My Lords, I am grateful to the Minister for all his hard work on this subject. As he says, the vaccination rollout rightly aims to prioritise the people who are most vulnerable to Covid, but this mainly focuses on age. On the BBC news yesterday, we heard directly from several people with learning disabilities about their well-founded worries concerning the Public Health England data, which shows that they are six times more likely to die from Covid. Given this, and the fact that only 40% of people with learning disabilities reach the age of 65, does the Minister agree that relying on a strategy of vaccinating them at the same age as other people magnifies their existing health inequalities and discriminates by failing to recognise their increased risk?

[Lord Bethell (Con)]

My Lords, the JCVI looked at this very question in great detail. It is very conscious of discrimination, but its focus is on morbidity. Its judgment, which I entirely back, is that age, more than anything else, is the driver of morbidity. That is why the prioritisation is structured in the way that it is. Those who are CEV are also prioritised. Many of those who are most vulnerable and who also have learning difficulties will qualify under the CEV threshold. However, I have passed her arithmetic to the vaccine taskforce. She makes a very good point that those with learning difficulties and autism have a different life profile and die at an earlier age. I have asked the system to ensure that this arithmetic has been considered in the prioritisation list. I will be glad to reply to her when I have the answer.

Mental Health Act Reform

Baroness Hollins Excerpts

Monday 18th January 2021 Lords Chamber

[Baroness Hollins (CB) [V]]

My Lords, I welcome the focus of the consultation and the White Paper on prevention, along with the new duties on local commissioners to ensure that they understand and monitor the risk of crisis for individuals—for example, when a family member dies—and to ensure an adequate supply of community services for people with learning disabilities and autistic people as an alternative to admission. Does the Minister agree that for these duties to have teeth, the descriptor “adequate” will have to be defined and subject to legal enforcement?

[Lord Bethell (Con)]

The noble Baroness asks a very perceptive question. I pay tribute to her work in this area and the challenge and scrutiny that she has given to the Government, which have helped lead to the position we are in at the moment. This is exactly the kind of area that we will be presenting for consultation, and I very much look forward to the noble Baroness’s contribution to that consultation.