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.

Covid-19 Update

Baroness Hollins Excerpts

Tuesday 15th December 2020 Lords Chamber

[Lord Bethell (Con) [V]]

I am grateful for the noble Lord’s insight. He is right that travel is the friend of the virus. Many of the growths in transmission have been associated with it; one thinks of the ski resort holidays at the beginning, the spring break migrations in America and other examples. I reassure him that, while he is right to question the arrangements around our airports and transport hubs, we have brought in a much more strenuous test to release programme which is much more realistic than the previous isolation programme. The procedures around the passenger location ports have been tightened up and the enforcement and tracking arrangements for passengers have been supplemented. There is now a very strong body of evidence to suggest that passengers are abiding by the testing programme. As he may know, private tests were launched yesterday, and their uptake has been incredibly impressive.

[Baroness Hollins (CB) [V]]

My Lords, 200,000 people are on their GP’s learning disability register and get the flu jab on the same terms as over-65s, but only one in 10 of this group has been prioritised for vaccination. My research 25 years ago found that these people were 58 times more likely to die before the age of 50 in ordinary times, and PHE research found a death rate 30 times higher for 18 to 34 year-olds with learning disabilities than for others of the same age during the first wave. To require them to wait until their chronological age group is eligible seems discriminatory. Will the Minister commit to look at this again?

[Lord Bethell (Con) [V]]

I completely acknowledge the correlation between mortality and learning difficulties that the noble Baroness alludes to. PHE has looked at this in respect of Covid very closely. That evidence played into the JCVI prioritisation process; it landed on age as the main determinant for that process but continues to review this based on evidence. The noble Baroness makes a good case, but I reassure her that the JCVI has looked at all this evidence very closely.

Covid-19: Transparency and Accuracy of Statistics

Baroness Hollins Excerpts

Monday 9th November 2020 Lords Chamber

[Lord Bethell (Con)]

My Lords, my noble friend is entirely right: statistics are critical and very important to public trust. No one takes them more seriously than this Government. However, I remind him that it was not the statistics that the Office for Statistics Regulation expressed concern about; it was about material being used in press conferences that has not been published at the press conferences as they happened. That was a function of the speed at which that press conference was turned around, but he is entirely right that that chart had a presentational error in it, which was corrected. It was published as a result of the publication of the data behind it. I reassure him that the data upon which decisions were made and the data that went into the central case of that chart was correct, and the fact that we have changed it demonstrates that we are committed to transparency in all these matters.

[Baroness Hollins (CB) [V]]

My Lords, my question is about when Her Majesty’s Government will make accessible communication a priority. The Prime Minister’s press conference was like a scientific symposium, except that the slides were presented too quickly, with too much information. It felt as if we were being blinded by science. Does the Minister agree that providing information that is accessible to all viewers would be a more effective public education strategy, and that that means using everyday language?

[Lord Bethell (Con)]

On the manner in which the information was delivered, I take the noble Baroness’s comments completely on board. While it is not my role to be in charge of the presentation of No. 10 presentations, I think a lot of people would agree with her that there were a lot of slides, which were very detailed and not all formatted for the TV screen. However, we are trying our hardest to share with the public as much of the insight and science as we possibly can, and we are trying to hit that balance between too little and too much information. We are trying to publish data as soon as it can be reasonably verified. There will be some scratchiness around the edges on that, and I take the noble Baroness’s points about last Saturday completely on board. However, the commitment to transparency and open debate on these issues is sincere.

Medicines and Medical Devices Bill

Baroness Hollins Excerpts

Committee stage & Committee: 2nd sitting (Hansard) & Committee: 2nd sitting (Hansard): House of Lords
Monday 26th October 2020 Grand Committee

[Lord Patel (CB) [V]]

My Lords, as I was not able to get in following the comments made by the noble Earl, Lord Howe, I say that, as a Cross-Bencher, I was irritated that we were not involved in the communication, I am glad that the statement has been made and I concur with most of the comments of the noble Baroness, Lady Thornton. I hope that from now on the procedure will be better. I had threatened to negative the amendments, but I will not do so now.

I speak in strong support of Amendments 10, 12, 74 and 75 tabled by the noble Baroness, Lady Cumberlege, to which I have added my name. I concur with all that she and other speakers have said. So far as her findings were concerned, I will repeat what I said when we debated her report. The profession needs to hide its head in shame that such trauma was inflicted on women and that such harm to unborn children was caused by disregard for guidance. As an obstetrician, I have never used mesh; I am one of those old-fashioned surgeons who did not use any artificial devices, but then I was not regarded as an avant-garde or fancy surgeon in that respect. Her report is a salutary lesson about the importance of patient safety. I will confine my remarks to medicines and medical devices, and the importance of embedding patient safety.

The noble Baroness’s report is entitled First Do No Harm. I say with humility that the motto on my coat of arms is “Primum non nocere”. I am privileged that the shield that bears it will hang for ever in the chapel of St Giles’ Cathedral in Edinburgh. I took that motto not because of the medical oath, which of course is correct, but because I was at the time chairman of the National Patient Safety Agency of England, an organisation that the noble Lord, Lord Hunt of Kings Heath, had chaired before me. It no longer exists, but its aim was to establish the whole concept and methodology of patient safety in the NHS in England. The NPSA, as it was then known, had developed a confidential reporting system for incidents relating to patient safety for healthcare staff and patients. Nearly 40% of the large number of reports—we used to get as many as 200 confidential reports a day—were related to medicines, medicines delivery and devices.

The concept of the safety of medicines is not new, and the experience of over a century has framed laws, regulations and amendments to make medicines safe and effective. In 1937, more than 100 deaths were reported in relation to sulfanilamide. They were due not to the medicine itself but to the solvent, diethylene glycol, which was added to the active ingredient. This led to regulations requiring testing of medicines in non-clinical and clinical settings prior to their being licensed for therapeutic purposes. Is it not ironic, especially in the context of the report of the noble Baroness, Lady Cumberlege, on Primodos, that the drug thalidomide, used as an antiemetic in early pregnancy, was not licensed in the USA due to animal studies that had shown some deformities in animal embryos? The USA therefore avoided the harm that the medicine caused to unborn children and a condition called phocomelia. It was accepted in a large part of the world, including the United Kingdom, and resulted in tens of thousands of children being born with such deformity.

There are patient groups to whom regulators need to pay special attention when approving medications, such as pregnant women, children and older people. We will come to amendments later on alluding to this. There are many examples of medications that are withdrawn from the market because of patient harm, emphasising the importance of a secure system of post-licensing surveillance. Some 1.1 billion prescriptions are supplied every year in primary care. Furthermore, a mid-sized hospital supplies about 50,000 doses a day. A study in 2018 showed that 237 million medication errors occurred every year in England, of which 68 million caused some degree of harm. While the harm may appear in one part of the system, the solution often lies across it. Much can be learned from a well-run and monitored national reporting and learning system, particularly as to which medicines are commonly involved in errors and hence patient harm. A single change that would make a big difference is a system that recognises and establishes the greater involvement of patients in their own care.

A healthcare system that wants to achieve a significant reduction in patient harm from medications will need a national programme in which different parts of the system work together. The amendment in the name of the noble Baroness, Lady Cumberlege, may be a start to that, and I commend her for it.

Unlike with medicines and the EMA, even at EU level, there is no agency for the safety of medical devices. Regulation relating to medical devices or standards is often a voluntary process and is not governed by national or international standards unless recognised by a regulator as mandatory. The list of what constitutes a medical device is long and ranges from machines and in vitro reagents to software. As the UK leaves the EU, it has an opportunity to devise a system of regulation focused on safety. In 2017, there were more than 16,000 device-related reports of harm. Following the publication by investigative journalists of a series of reports on medical devices known as “The Implant Files”, there has been a demand from doctors and others for greater transparency from manufacturers of devices, particularly regarding safety. The same stringent regulatory process, including disclosure of data related to adverse events, should be part of a market approval process.

I know that several amendments coming up are related to safety and licensing, which currently does not exist in the UK for medical devices. The amendment in the name of the noble Baroness, Lady Cumberlege, in relation to patient safety, including medical devices, will go further than current requirements for market approval. Information and data related to safety, both short-term and long-term, may well be a requirement for market approval. Why is it necessary to have full safety data to license a cardiac drug but not for an implanted pacemaker? As an example, a device called Nanostim was withdrawn from the market three years after safety approval due to the alarming number of patients to whom it was causing harm, by which time 1,400 patients had had it implanted. The noble Baroness is right to highlight the need for more effective regulation for safety of medical devices and medication overall. I am pleased to support her amendment.

[Baroness Hollins (CB) [V]]

My Lords, it is a pleasure to follow my noble friend Lord Patel. I commend his work on patient safety over many years. I strongly support the amendments in this group, which are intended to improve patient safety—in particular, Amendments 10 and 12 tabled by the noble Baroness, Lady Cumberlege. I withdrew my own, very similar amendment and added my name to that of the noble Baroness.

In the present drafting, as the noble Baroness has explained, there is no explicit hierarchy of the three stated principles: safety, availability and attractiveness of parts of the UK as a place to conduct clinical trials or supply medicines, yet this Bill could be so much more effective if it was more explicitly about patient safety. These amendments put patient safety first, as so clearly called for in the noble Baroness’s shocking recent report First Do No Harm. I quote from that report’s foreword:

“The system is not good enough at spotting trends in practice and outcomes that give rise to safety concerns.”


I simply stress that safety must apply across all aspects of the development and provision of human medicines with respect to both mental and physical illness. Noble Lords may be unfamiliar with the national STOMP programme, launched in 2016—STOMP stands for stopping over-medication of people with a learning disability, autism or both. Public Health England says that, every day, between 30,000 and 35,000 adults with a learning disability take psychotropic medications when they do not have the health conditions the medicines are for—they are also prescribed to children and young people—yet such medicines may have serious side effects, including adverse effects on their mental and physical health.

I do not wish to speak at length about this or other aspects of these amendments other than to stress that patient safety must be the foremost consideration in this Bill.