UK Parliament / Open data

Transforming Care Programme

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.

2.58 pm

About this proceeding contribution

Reference

644 cc566-8 

Session

2017-19

Chamber / Committee

House of Commons chamber
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