Transforming Care Programme

Sandy Martin Excerpts

Thursday 5th July 2018 Commons Chamber

[Norman Lamb]

I totally agree. It is, as I said at the start, sobering. In a way, all of us who strongly support the NHS must not laud it as a perfect institution with nothing to complain about. As far as this group of people are concerned, they have been very badly let down. Fundamentally, in many cases they have died early through neglect. That is intolerable in this day and age.

The nine principles, which are positive and empowering, are really good. I sign up to them completely. It is the implementation that is lacking and has largely failed. I say to the Minister that she is very fortunate to be in her wonderful job. My great frustration is that this programme came early in my time as Minister, but I learned, as I did the job, just how critically important implementation is. You think that by establishing good principles and getting everyone to agree to implement them those organisations will do what they have committed to do. It was probably naïve to think that. The reality was that nothing changed and it still has not changed. One critically important lesson to learn from that failure is to have a total, obsessive focus on implementation and national leadership.

[Sandy Martin (Ipswich) (Lab)]

Does the right hon. Gentleman agree that to achieve transformation in care, investment needs to be put into alternatives in the community before it is possible to free vulnerable people from these institutions, and that far too often, the public sector tries to make savings before it has made the investment in the things that will achieve the same?

[Norman Lamb]

The hon. Gentleman makes a really important point, and I totally agree. I said at the start that this is not a great demand for a whole load more money. However, some up-front investment is needed, not only in establishing the facilities in the community, but in training people in the community, and I will come back to that in a little while.

--- Later in debate ---

[Dame Cheryl Gillan]

Yes, it is very important that we look at what arrangements the devolved countries make for people with autism. Certainly a few years ago, Wales was well in advance with its plans for autism, which I found most commendable, but I think it now needs to revisit and update its plans, because none of these plans must be left to one side; they need to be constantly reviewed and updated.

I am pleased that next year we will have the opportunity to conduct a 10-year review of the Autism Act. I hope the right hon. Gentleman will contribute to the work that many Members are doing on both sides of the House in various areas, from education to employment, healthcare and even the over-representation of people with autism in the criminal justice system, so that we can put down a marker for the Government after 10 years on what progress has been made and how much further we have to go. If the hon. Member for Strangford (Jim Shannon) would be good enough to send me a link to the plans in Northern Ireland, or point me in the right direction, I am sure they will be taken into consideration as we carry out the review.

I am pleased to see the Minister in her place, as she obviously has a lead role, but I think that all relevant Departments need to play their part. I still have a feeling that we need a cross-departmental ministerial taskforce to cover the areas that I have just been highlighting, such as health, education, housing, and justice, all of which we will include in the APPG’s summary and presentation to the Government next year. Let me put down a marker for the Government. I want to know what plans the Minister has for the future of transforming care, whether she will establish that cross-departmental taskforce to lead the process, and what steps she will take to reduce the number of admissions of autistic people and improve the community services that should support them.

I work closely with many autism charities, and in particular with the National Autistic Society. Alongside Mencap and the Challenging Behaviour Foundation, it has been leading research on the experience of families who have been affected by the transforming care programme. It wanted to look into exactly how relatives came to be in mental health hospitals, and what was getting in the way of their being discharged back into the community. I commend to the Minister the report “Transforming Care: our stories”. It contains the very powerful stories of 13 families, and I think that she will find it very useful, if she or her officials have not yet been able to read it.

The report found that, despite the existence of a national programme, five areas needed real focus to make the programme successful. The first is

“Making sure the right services are available in the community”.

I think we have covered that. The second is involving and listening to individual families, and helping them to be heard through advocacy if necessary. The third is improving the quality of in-patient care. The fourth is

“Making plans for discharge and sticking to them”.

The fifth is providing specialist support from trained and understanding staff. For me, that last one is key. When we have met someone with autism, we have met just one person with autism. Everyone is different. Staff really need to understand that, and to be trained to understand people with autism.

[Sandy Martin]

Does the right hon. Lady agree that one of the most important aspects of support for the families of children and young people with autism is the availability of respite care, to enable them to cope with the very great additional duties that they have?

[Dame Cheryl Gillan]

Absolutely. I know from my constituency casework—as, I think, will every MP—that providing a safe home and a safe environment for a family member who has autism can be a very intense, demanding and challenging process, and respite care plays an important part in giving family members a breathing space.

The report includes some remarks from someone called Anna, the mother of Catherine, who is autistic and has a learning disability and obsessive-compulsive disorder.

“Anna told us, ‘she’s not getting any treatment, it’s just a holding pen because staff [in the unit] don’t have the right skills, expertise or mindset…Everything is about seclusion, never about trying to prevent incidents happening in the first place.”

That demonstrates to me that there is a lack of training, and that much more emphasis should be put on that.

The report goes on to outline recommendations made from people and organisations at every level, from individual professionals to NHS England and the Government. In particular, it suggests that a cultural shift is needed to ensure that individuals and their families are listened to in a way that can reduce the number of adversarial relationships that sometimes arise. The importance of a good understanding of both autism and learning disabilities, as a comorbidity, should be emphasised more than it is at present.

One of the parents of an autistic man with mental health problems said:

““Stephen just falls between the gaps and no one takes ultimate responsibility for his case… Where is the pressure to get Stephen back into the community?”

That is a cry for help from a father who wants to see his son go out into the community and have the quality of life that everyone deserves to be able to achieve.

The report also highlights a lack of accountability throughout the system, particularly when it comes to meeting the needs of autistic people. At a national level, in NHS England, leadership for autism falls into the gap between established learning disability and mental health teams. The appointment of a new strategy lead for autism in NHS England is considered to be a very positive step, but I need to be reassured that, in the future, NHS England will focus on the needs of autistic people in order to meet the Government’s requirement for a reduction in their health inequality, which is a commitment in the NHS mandate. I hope that the Minister will tell us what steps she will take to ensure that NHS England allocates appropriate resources to the needs of autistic people, and to ensure that the issues set out in “Transforming Care: our stories”—I am going to give her a copy—are addressed.

Autism charities regularly hear that autistic people struggle to find mental health support that meets their needs, and in the worst cases, if this is not available, people hit crisis and are admitted to hospital. Traditional mental health interventions might need changing, for example by using clear, non-metaphorical language or communicating with someone who does not speak. That, again, requires a good understanding of autism.

In 2016 NHS England published its mental health “Five Year Forward View” outlining how it plans to improve mental health services in England. It includes a number of proposals for new care pathways to help people access the right support and, importantly, it proposes a care pathway for autism. Work on designing this pathway is due to start this year, but I have not seen any detail on what it will include. It is vital that it covers the following for children, young people and adults on the autism spectrum: timely access to autism diagnosis, autism training for all mental health staff, and the ability to make reasonable adjustments for mental health treatments so that if autistic people need mental health support, they can get the right help from services. I hope that the Minister will also address how the autism care pathway will be developed and that it will cover diagnosis, access to tailored mental health support and autism training.

Another contributory factor to the number of autistic people in mental health hospitals is the inclusion of autism in the Mental Health Act 1983 definition of mental disorder, meaning that autistic people can be sectioned without a diagnosed mental health problem. The independent review of the Mental Health Act is very important and has been welcomed by the autism charities. They believe it is important to create a legal regime around mental health support that properly meets the needs of autistic people and their families. The status quo fails to do this, and that has resulted in autistic people being inappropriately detained under the Act and far too often subjected to damaging over-medication. The NHS digital data show that autistic people are not benefiting entirely from the NHS England transforming care programme, because the in-patient numbers are failing to meaningfully reduce and in some cases are rising. The review’s interim report has identified this definition of autism as a mental disorder as a key question to be addressed in the final report, and I strongly urge that the review must address the inequality for autistic people at the heart of the Mental Health Act. I hope the Minister addresses that in her closing remarks.

I have spoken for some time, and I hope I have added to the debate initiated by the right hon. Member for North Norfolk, although I appreciate that I have, inevitably, repeated some of the points he made. In conclusion, I go back to something I said earlier about the transforming care programme that I think summarises the situation. Put simply, if transforming care does not work for autistic people, it will not work. We want transforming care to work; we want it to succeed. It has made a start: it is not an all-good start, but it is not an all-bad start. The Minister and the Government have a golden opportunity to turn what is a visionary programme into something that can reflect the success of the care with which we look after people in our community with learning disabilities and autism. I look forward to hearing the Minister’s response.