Plans and promises: Will the new NHS really be brighter for disabled children?

Plans and promises: Will the future NHS really be brighter for disabled children?

Earlier this week the NHS’s Long Term Plan was published. It’s a pretty big document and, as I’ve been away, I’ve not had much chance to investigate in depth about what it means for families of children with disabilities.

However, since I returned late Tuesday, I’ve been taking a look it, and at what charities and others have been saying about it regarding mental health and disabled children in general, so I’ve pulled it together for you in one place. 

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What is the NHS Long Term Plan?

As we know the NHS is under a lot of pressure for many financial reasons. On top of that, as the world moves forward technologically and digitally, the NHS needs to do the same too. The population and its health needs change as well; we're growing older, staying around for longer (not always in good health) and more babies, especially preemies, are surviving. So the NHS Long Term Plan (LTP) is for five years and onwards to meet the challenges and also aiming to prevent ill health in the first place.

Focusing just on children and young people, what does it say? I’ve pulled out the bits that you’re interested in but of course, if you want to read the whole thing, you can do so here https://www.longtermplan.nhs.uk

But before we start...

But before we get into it, I confess to feeling a little sceptical. It looks great on paper and all, but when it comes to CAMHS, there have been so many promises and so much money earmarked, and yet little has changed for the better. Can the NHS really succeed with these planned improvements where the other initiatives have made so little impact? Will money that is put into it actually end up where it is supposed to go? Will learning lessons translate to better care?

And why does the NHS need a grand, shiny new plan to know that locking disabled children up is just plain wrong? All the points I'm about to lay out for you seem to be playing catch up with reality in 2018. It's not the fault of the NHS as a "thing"; we all know how lucky we are to have it. It's just that change seems to take so long and even one year in the life of a child is a long time to suffer without the right care - or suffer with poor care. So many of these things below are "over the next five years". Children MUST be a priority and I hope that working out the details of everything below starts right now.

Learning disability and autism

Chapter Three of the LTP deals with progress on care quality and outcomes “A strong start in life for children and young people”

Breaking it down to bullet points, it promises: 

  • Action to tackle the causes of morbidity and preventable deaths in people with a learning disability and/or autism. 
  • Improving the uptake of the existing annual health check in primary care for people aged over 14 years with a learning disability to at least 75% a year. If your young person would qualify, you might want to follow this up.
  • Piloting a specific health check for people with autism.
  • Expanding (STOMP-STAMP) programmes to stop the overmedication of people with a learning disability, autism or both. 
  • Continuing to fund the Learning Disabilities Mortality Review Programme (LeDeR), to make improvements to the lives of people with learning disabilities.

Educating NHS staff about disabilities

This section is particularly crucial as it will indeed have benefits into the long-term, but it remains to see how it is done and how it involves disabled people themselves.

“3.32. The whole NHS will improve its understanding of the needs  of  people  with learning disabilities and autism, and work together to  improve  their  health  and wellbeing. Following a consultation on the options for delivering awareness training, NHS staff will receive information and training on supporting people with a learning disability and/ or autism…. [NHS systems & Partnerships] will be expected to make sure all local healthcare providers are making reasonable adjustments to support people with a learning disability or autism.” 

NHS Long Term Plan

I am on our local GP Patient Participation Group and one of the things I’ve raised is that all staff, including receptionists should know when they are speaking, on the phone or in person, to someone who has a learning disability/autism. So it’s good news that a ‘digital flag’ will be developed for the patient record to ensure staff use reasonable adjustments.

“We will work with the Department for Education and local authorities to improve their awareness of, and support for, children and young people with learning disabilities, autism or both. And we will work with partners to bring hearing, sight and dental checks to children and young people with a learning disability, autism or both in special residential schools.”

The wait for autism diagnosis

We all know how long the wait for a diagnosis of autism can be for many children. The LTP says that “Over the next five years, autism diagnosis will be included alongside work with children and young people’s mental health services, to test and implement the most effective ways to reduce waiting times for specialist services. "This will be a step towards achieving timely diagnostic assessments in line with best practice guidelines. Together with local authority, children’s social care and education services as well as expert charities, we will jointly develop packages to support children with autism or other neurodevelopmental disorders including attention deficit hyperactivity disorder (ADHD) and their families, throughout the diagnostic process. "

It also implements the recommendation by The Council for Disabled Children's Dame Christine Lenehan for a deignated key-worker for children and young people with the most complex learning disabilities, autism or both. It says, "Initially, key-worker support will be provided to children and young people who are inpatients or at risk of being admitted to hospital. Key-worker support will also be extended to the most vulnerable children with a learning disability and/or autism, including those who face multiple vulnerabilities such as looked after and adopted children, and children and young people in transition between services.”

Inpatient “care”, seclusion & the right to live fulfilling lives

The plan aims to change the way budgets are managed “so local providers will be able to take control of budgets to reduce avoidable admissions, enable shorter lengths of stay and end out of area placements."It also states that, where possible, people with a learning disability, autism or both will be enabled to have a personal health budget (PHBs).  I won’t be holding my breath about this though!

The plan pledges that within five years, “No more than 12 to 15 children with a learning disability, autism or both per million, will be cared for in an inpatient unit.” The problem with pledges like this is, of course, how many children actually need such a high level of care at any one time, and where in England they live. It’s important that pledges don’t end up with families being forced to travel great distances because in-patient units locally have then been closed as a result.

“Every local health system will be expected to use some of this growing community health services investment to have a seven-day specialist multidisciplinary service and crisis care….We will work with the CQC to implement recommendations on restricting the use of seclusion, long-term segregation and restraint for all patients in inpatient settings, particularly for children and young people. “

Children/Young People’s Mental Health 

Mental health is a growing problem across society generally. But when half of of all mental health problems are established by the age of 14 (and increasingly in girls) and one in nine 5-15 year olds affected by mental ill health, tackling it early will not only save a lifetime of distress by will also ultimately save the NHS money. 

We all know about the misery of CAMHS and its apparent failure to improve despite numerous initiatives over the past few years, so how does the LTP address this? 

“The NHS is making a new commitment that funding for children and young people’s mental health services will grow faster than both overall NHS funding and total mental health spending. This means that children and young people’s mental health services will for the first time grow as a proportion of all mental health services, which will themselves also be growing faster than the NHS overall.”

This means that over the next five years: 

  • Continuing to invest in expanding access to community-based mental health services to meet the needs of more children and young people. 
  • Boosting the numbers of children and young people aged 0-25 able to access support via NHS funded mental health services and school or college-based Mental Health Support 
  • Boosting investment in children and young people’s eating disorder services. Four fifths of children and young people with an eating disorder now receive treatment within one week in urgent cases and four weeks for non-urgent cases. 
  • Expanding timely, age-appropriate crisis services to improve the experience of children and young people and reduce pressures on accident and emergency (A&E) departments, paediatric wards and ambulance services. 
  • With a single point of access through NHS 111, all children and young people experiencing crisis will be able to access crisis care 24 hours a day, seven days a week.
  • Mental health support for children and young people will be embedded  in schools and colleges. The Children and Young People’s Mental Health Green Paper set out proposals to improve mental health support in schools and colleges. 
  • The NHS will fund new Mental Health Support Teams working in schools and colleges, building on the support already available, which will be rolled out to between one-fifth and a quarter of the country by the end of 2023. These services will be supervised by NHS children and young people mental health staff and will provide specific extra capacity for early intervention and ongoing help. Teams will receive information and training to help them support young people more likely to face mental health issues – such as Lesbian, Gay, Bisexual, Transgender (LGBT+) individuals or children in care, 
  • A new approach to young adult mental health services for people aged 18-25 to support the transition to adulthood. 
  • Extending current service models to create a comprehensive offer for 0-25 year olds that reaches across mental health services for children, young people and adults. The new model will  deliver an integrated approach across health, social care, education and the voluntary sector, such as the evidenced- based ‘iThrive’ which currently covers around 47% of  the 0-18 population and can be expanded to 25 year-olds. 
  • Continuing to work with the Mental Health in Higher Education programme to improve student welfare services in universities, including focusing on suicide reduction, improving access to psychological therapies and groups of students with particular vulnerabilities.

It also includes plans to tackle health inequalities experienced by people with a disability

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What does it say about Carers?

There is some input about carers in the plan to ensure that carers have appropriate back-up support in place for when they need it and to have that information included in their Summary Care Records for when they, or health and care professionals working with them, might need it so that carers do not have to deal with emergencies on their own.

It also includes plans to prevent young carers struggling on their own with difficult and multiple challenges, by rolling out ‘top tips’ for GPs developed by Young Carers, to give better access to preventive health and social prescribing for young carers and timely referral to local support services. Read all the carers section here

What do the charities say? 

Mark Lever, Chief Executive of the National Autistic Society, said: "The NHS plan is a once in a generation opportunity to finally address the unacceptable health inequality faced by autistic people in England.

"Research suggests on average autistic people have much worse physical and mental health than the general public – and may even be at greater risk of dying early. And we hear every day of autistic people who are waiting many months, even years for a diagnosis and support, just because of the poor or overstretched services where they live. Sometimes they can’t get any support at all. This can be devastating, leaving autistic people and their families to fall into crisis and isolation.

“We hope that by making autism a clinical priority and promising to drive down diagnosis waiting times, and to pilot annual health checks and improve support for physical and mental health problems, NHS England is recognising the scale of the appalling situation. But they must also be ready to put in the funds needed to make it right.”

The Disabled Children’s Partnership (of which SNJ is a part) welcomed the plan, especially the focus on reducing institutional care, but was also cautious about whether it can meet the funding shortfall.

The mental health charity, Rethink, breaks down the whole mental health offer here but another influential charity, Disability Rights UK says it ignores the crisis in social care. “The new NHS Plan has much to offer disabled people, older people and carers but it will be like a plane flying with one of its engines misfiring unless social care can also fully play its part.

For a national overview, you can check out the BBC report here 

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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two young adults with autism. Tania is a member of the Whole School SEND Expert Reference Group for SEND Leadership, the Ofsted SEND Inspections Stakeholders Group, and sits on the Advisory Board of the Royal Holloway, University of London Centre of Gene and Cell Therapy.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Tania Tirraoro
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