Health and Care Bill

Baroness Fookes Excerpts

Committee stage
Wednesday 9th February 2022 Lords Chamber

[Baroness Hollins (CB)]

My Lords, Amendment 297L seeks to introduce mandatory training in learning disability and autism for all health and care staff. My noble friend Lady Bull is unable to be in her place tonight but asked me to express her strong support for this amendment.

The amendment is important because of the sheer scale of health inequalities that people with a learning disability and autistic people face. According to NHS England, people with learning disabilities have a median life expectancy 20 to 30 years shorter than those without a learning disability. In 2014, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities found that 37% of those deaths may have been avoidable with better-quality healthcare.

There are a number of obstacles to achieving better outcomes. These include the low confidence of health and care professionals in their ability to identify and treat serious illness in these groups. The amendment aims to increase their knowledge and skills so that they can provide equitable care for people with learning disabilities and autistic people.

For many years the Government’s view was that mandating standards for training was not needed and that awareness raising should be enough, but then 18 year-old Oliver McGowan died—another tragic and wholly avoidable death of an autistic man with a learning disability. I could name so many grieving families who hope for some justice for their sons and daughters—families who hope that no other family will have to go through what they did. Oliver’s mother, Paula McGowan, is one determined lady and she persuaded the honourable Caroline Dinenage, then Minister of Health, to commission, pilot and evaluate the Oliver McGowan mandatory training programme for all health and social care staff. I welcome the Government’s continuing commitment to introduce the training.

The evaluation of the three pilots is nearly ready. So, what will happen then and how soon will the promised training begin? Of course, there are practical issues in rolling out an effective training programme nationally. I can understand possible government concern about the potential cost of introducing this, but these concerns should not hold us back from putting on statute something that the Government have agreed to. Oliver’s name was not permitted on the amendment but naming the training after Oliver would not only pay tribute to him and his family who have campaigned so hard but would remind us, and those doing the training, that this is not some dry academic subject. It is about people like Oliver: people who can be put at serious risk if staff are inadequately trained.

One aspect of the amendment goes beyond the Government’s existing commitment. This is the proposal for a code of practice with guidance on how the training would be created and delivered. The code would ensure that the key asks of campaigners would be put on a statutory footing, particularly the co-production and co-delivery of training with those with lived experience. Without this, I fear that the training would not reflect the key issues which people with a learning disability and autistic people face on a regular basis in the NHS.

I recognise that training might vary in detail depending on whether or not staff have a patient-facing role, and that clinical staff need a higher level of skill. I designed and led the delivery of training for medical students and trainee psychiatrists at St George’s Hospital Medical School for around 30 years, directly involving experts by experience from the beginning. This included working with disabled arts groups. For 20 years, I employed people with learning disabilities on the teaching staff to co-deliver the teaching and to participate as standardised patients in final clinical examinations. This meant that students had a chance to practise the communication skills that are central to improving outcomes for their patients; online training does not work to the same extent.

Currently, this type of education is dependent on a champion such as me to sustain it and that is a key reason why it needs to be mandated. One challenge that I am expecting from the Government is that it would be difficult to recruit and train experts by experience. I challenge this, given that only 6% of people with learning disabilities and 18% of autistic people are in paid employment. There is a ready workforce if there are willing employers and there are a number of academic departments able to offer the very simple and straightforward training and support they would need.

It is also crucial for the training to reflect and link with existing pieces of legislation and regulations such as the Autism Act, the learning disabilities core skills education and training framework, and the core capabilities framework for supporting autistic people. The amendment would require the code of practice to incorporate these and to ensure that any revisions to these regulations and legislation would be reflected in the code of practice and the training delivered. Building on this theme of co-production is the amendment’s requirement for the Secretary of State to

“consult such persons and bodies as they consider appropriate”

in the development of the code.

I hope the Minister will welcome this amendment, given the cross-party support that the development of the Oliver McGowan mandatory training programme has received in the other place. I beg to move.

[The Deputy Chairman of Committees (Baroness Fookes) (Con)]

My Lords, the noble Baroness, Lady Brinton, is taking part remotely. I invite the noble Baroness to speak.

[Baroness Brinton (LD) [V]]

My Lords, I am delighted to support Amendment 297L from the noble Baroness, Lady Hollins, which proposes mandatory training on learning disability and autism and how to care for people in the health sector. The amendment is also signed by the noble Baronesses, Lady Bull and Lady Merron.

People with learning disabilities and autism need to be cared for by those who really understand their condition so that they can carry out their roles effectively. This amendment formalises that in terms of the plan, what needs to be covered and what the code itself needs to cover. Those of us who have family members with learning disabilities or who have worked closely with them know that this specialist understanding is vital, and for a broader range of people working with them than is usually understood.

The noble Baroness, Lady Hollins, highlighted the need to ensure good understanding of health issues and how they are managed. Oliver McGowan’s story is shocking and we need to ensure that it is not repeated at a strategic level. During the pandemic we heard of far too many “do not attempt resuscitation” orders for people with learning disabilities. Indeed, it took some considerable time to get access to Covid vaccines for people with Down’s syndrome and other learning disabilities, even though they were more susceptible. It took too long to get that changed. My Down’s nephew in Spain is still not entitled to a vaccine.

In an earlier amendment we discussed abuse in institutional settings. Last year, there were some appalling undercover videos of staff physically abusing autistic students at a residential school. One of the comments was that it was evident that some staff had not been trained to understand and manage autism. Training is not needed just to prevent bad behaviour; well-trained staff in health and education settings are a joy to watch when they are working with those they are supporting, and it can truly enrich their lives.

--- Later in debate ---

[Lord Hunt of Kings Heath (Lab)]

My Lords, I welcome the intention to make the Healthcare Safety Investigation Branch a statutory body. We know that healthcare is very complex and that adverse events unfortunately occur very regularly. Recognising that weak safety systems create the conditions for the inevitability of error is vital to achieving high levels of patient safety. The noble Lord, Lord Patel, and I chaired the National Patient Safety Agency at different times, and we saw there the problems of having an agency where there was no mechanism for turning its work into appreciable action in the health service. I have great hopes that the HSSIB may well have a major impact on how the NHS improves safety.

In 2019, we had a Bill that was interrupted by the general election, and we now have these clauses in this Bill. Prior to the Bill in 2019, there was pre-legislative scrutiny from a Joint Select Committee of both Houses. This Select Committee argued that the most critical priority is to ensure that the prohibited disclosure of safe space provisions is fully fit for purpose in protecting the identity and statements of individuals who participate in our national safety investigations. The whole concept of safe space is so important. Without people in the service having the confidence to be able to tell the branch what is happening and where things have gone wrong, I do not think the branch is going to be able to work effectively.

It is very significant that the Select Committee concluded that any concession to safe space proposals—to coroners, for example—might significantly harm the branch’s ability to conduct effective safety investigations and would undermine one of the core principles under which the branch is being established. The Government have never once given any explanation of why over 90 coroners should be allowed to override the safe space concept.

I am very disappointed to see that the senior coroners can, under paragraph 6 of Schedule 14,

“require the disclosure of protected material by the HSSIB”.

I am very supportive of the amendment of my noble friend to remove those coroners. In fact, I do not believe this is going to work unless we succeed in doing so. I look forward to some decent, substantive explanation—not just that the MoJ insisted on it, which we think is probably the real reason the Department of Health failed to stop this—as to why coroners should be allowed to impede the success of this endeavour.

The leadership of this organisation is clearly critical, and we have seen in recent weeks just how critical. The Joint Select Committee thought that, to emphasise the wider accountability of the HSSIB to Parliament, both the chair and the chief investigator should be subject to pre-appointment scrutiny by the Commons Health and Social Care Select Committee. The Government agreed at that time to have a look at it, and I would be grateful if the noble Baroness could tell me what the conclusions are. Again, I would say that, in the light of recent very unfortunate experience within the leadership of this organisation, parliamentary scrutiny is very much justified.

There is some debate about whether the Secretary of State should have the power in Clause 97 to direct the branch to carry out an investigation. I do not think that undermines the independence of the branch. I think it is perfectly proper for the Secretary of State to be able to order an intervention; after all, he or she is responsible for the NHS to Parliament. But it is sensible that that power should not be unlimited and that the branch should have sufficient resources to carry out such an investigation and not have all its work diverted because of a request or instruction by the Secretary of State—hence my Amendment 309.

It is also important that, where an investigation is carried out under such a direction, a copy of the final report should be laid before Parliament, setting out what action the Secretary of State proposes to take in response to the report. That is the subject of my Amendment 310.

In Clause 115, the oversight functions of the Secretary of State are laid out, including a power of direction in the event of HSSIB failure. That is quite normal. Such direction may not direct the outcome of a particular investigation. That seems sensible to me, but it should happen only in exceptional circumstances, and in the interest of transparency and accountability, the clause surely needs strengthening through my Amendments 312AA and 312AB.

I think the Government will find there is a great deal of support for the establishment of the branch as a statutory agency, but unless they can resolve the safe spaces concept and strengthen the governance, this branch may have some difficult challenges in the future. I beg to move.

[The Deputy Chairman of Committees (Baroness Fookes) (Con)]

My Lords, the noble Baroness, Lady Brinton, is taking part remotely. I now invite the noble Baroness to speak.