Learning disabilities: Identifying and managing mental health problems

The role of the National Institute for Health and Care Excellence (NICE) is to improve outcomes for people using the NHS and other public health and social care services.

Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution for England. Treatment and care should be centred on the patient, taking into account their needs. Additionally patients should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals.

NICE guidance is written to reflect these priorities and focus on improving the care and treatment provided in the health service. They are prepared by groups of healthcare professionals, people who have personal experience or knowledge of the condition, patient representatives, and scientists, and offer evidence-based written information tailored to the needs of the child or young person and their parents or carers.

NICE have just published the Learning disabilities: identifying and managing mental health problems quality standard (QS142) on their website. This quality standard covers the prevention, assessment and management of mental health problems in people with learning disabilities in all settings (including health, social care, education, and forensic and criminal justice). It also covers family members, carers and care workers.  Quality standards describe best practice based on current evidence – what service providers should be aiming for.

In summary this guidance sets out 5 quality standards:

  1. Young people and adults with learning disabilities have an annual health check that includes a review of mental health problems.
  2. People with learning disabilities who need a mental health assessment are referred to a professional with expertise in mental health problems in people with learning disabilities.
  3. People with learning disabilities and a serious mental illness have a key worker to coordinate their care.
  4. People with learning and mental health problems who are receiving psychological interventions have them tailored to their preferences, level of understanding, and strengths and needs.
  5. People with learning disabilities who are taking antipsychotic drugs that are not reduced or stopped have annual documentation on reasons for continuing this prescription.

Uniquely Human: a different way of seeing autism

uniquely humanUniquely Human: a different way of seeing autism

by Dr Barry M Prizant
ISBN 9780285643338

We all have different coping strategies. Think about the behaviours associated with autism? Hand flapping, spinning, rocking, a restricted range of interests. A lot of current thinking aims to eliminate these behaviours. But what if they are strategies to cope, to adapt and to communicate your emotions? What if the current thinking is just treating an autistic person as a problem to be solved rather than an individual to be understood? Dr Prizant draws on his four decades of experience from working in the field of autism to present his thoughts and suggestions for helping those with autism to live more fulfilling lives and to help their relatives find a greater understanding.

We now have this book available to borrow in our library, along with a wide range of other books on autism and other special needs. Why not take a look at our book list?

Sleep and Head Banging

Child crying in a cotHead banging is just one of the issues that our Sleep Practitioners can help families with. It’s a difficult behaviour to eradicate because it generally happens while the child is sleeping. Often it’s only possible to manage the behaviour rather than being able to remove it entirely.

Often it’s the noise that the child makes while head banging that’s the problem, especially for the rest of the family.

Some strategies that may help include introducing a different sensory input, like white noise music for example. Also, if a child is banging their head against the wall, you could consider moving their bed away from the wall. Or, if your child is banging on the bed frame or head board, consider putting the mattress directly on the floor and removing the frame or board.

Sarah Coldrey, our Sleep Practitioner for the South West recently worked with a family who had a child who was head banging on his mattress. He wouldn’t use a pillow and, because his parent’s room was just next door, it was making enough noise to disturb the their sleep. Sarah recommended changing to a memory foam mattress or topper, with the hope that the mattress would be softer and potentially reduce the noise.

A few weeks later, the family told Sarah that they had purchased a memory foam mattress straight away and they had not heard their son head banging since.

Find out more about our Sleep Service and contact us for advice.

Teenage Sleep

sleeping-boy-1024x683Back in 2015, Sarah Coldrey, our Sleep Practitioner in the South West met with the Hunter family from Brixham.

The Hunters have three children and their eldest son, who has ADHD was having sleep issues. The fifteen year old wasn’t falling asleep until 5am most days and was missing a lot of school.

She recommended a technique called Chronotherapy which involves altering bedtimes each night. Instead of moving the bedtime backwards gradually as you would with young children, which takes a long time to do and isn’t as successful in older children, you move it forwards by a few hours each day.

Here is an example of how the times can be moved:

1st night: sleep at 4 a.m., wake at 12 midday

2nd night: sleep at 7 a.m., wake at 3 p.m.

3rd night: sleep at 10 a.m., wake at 6 p.m.

4th night: sleep at 1 p.m., wake at 9 p.m.

5th night: sleep at 4 p.m., wake at 12 p.m.

6th night: sleep at 7 p.m., wake at 3 a.m.

7th night: sleep at 10 p.m., wake at 6 a.m.

Sarah was reluctant to suggest this technique initially because of the need to monitor the times closely and consistently. However, the family were willing to try anything that could have a positive effect on their son, who had exams coming up.

Sarah followed up with the family a couple of weeks later and was delighted to hear that the technique had been successful and the teenager had been sleeping from 10pm-6am everyday for a week and had not missed school for a whole week, which was the first time in a long time.

Fast forward to eighteen months later and the now seventeen year old teenager is still sleeping well. He currently sleeps from 11pm-7am and has slept well since the programme was introduced. He goes to college now and doesn’t miss classes.

When Sarah caught up with the family she was delighted to hear that the family have still been experiencing success from implementing the programme. Lee, the father plans to implement the same plan with their younger son who also has ADHD and struggles to settle. Lee said he would definitely recommend the technique for children that aren’t falling asleep until the early hours and also commented that the programme gave him chance to spend time and bond with his son.

Find out more about our Sleep Service and contact us for advice.


Sleep Forum Addresses Sensory Difficulties

sleeping-boy-1024x683On the 10th November, Sleep Practitioner Claire Varey held a sleep forum at Burton Street Foundation, Sheffield.

Claire, who is Cerebra’s Sleep Practitioner for the North, addressed the issues of settling, night waking, early rising and difficulty sleeping alone. There was also opportunity to look at ways to structure an effective bed time routine which can help to tackle some of the issues which are commonly highlighted by parents.

As well as the sleep presentation, there was also a sensory presentation by Jo Roberts who works as a physiotherapist at Ryegate Children’s Therapy Unit in Sheffield. It looked at the impact sensory processing issues can have on children with additional needs ability to settle and get ready for sleep.

When discussing difficulties with sleep, sensory difficulties was a topic that was frequently mentioned by parents and carers, so the response to the forum was high.

The feedback following the event was overwhelmingly positive and also highlighted the need for a longer session covering information on sensory difficulties.

One parent said on the day ‘everything that Jo spoke about was like she was describing my son, she hit the nail on the head. I am really looking forward to taking the information I have learned today and getting started as soon as I can’. Another parent noted ‘the combination of sleep information backed up by the sensory presentation has given me lots to think about and how I can alter the small things that will hopefully make the difference in helping my daughter get more sleep’.

Burton Street Foundation provided a fantastic venue and parents had the opportunity to have a welcoming cuppa and cake, whilst also being able to chat with our colleagues from Contact a Family and Core Assets, who had stalls at the event too.

Disabled Facilities Grants Project

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Joseph is one of the students working on our Legal Entitlements and Problem-Solving (LEaP) Project at the University of Leeds. In this article, Joseph tells us more about the students’ Disabled Facilities Grants project.

William (not his real name) is 14 years old and has autism. He’s a big, tall lad, who is much loved by his family.  William is non-verbal and has severely challenging behaviour. He has two younger sisters who are affected by his unpredictable, aggressive behaviour and their sleep is often disrupted when William is awake at night.  His family members say that they could cope if there were more space in their home – so that William could have a place to calm down on his own and the family could have some space and time to relax with friends.

Their house is small and they are unable to afford this building work: it would cost about £45,000 for a small extension to provide the necessary space for William (a bedroom and bathroom).  Without this adaptation work they will be unable to cope and the only alternative would be for the local council to provide residential full time care.  This would cost from £3,000 – £9,000 per week, amounting to significant costs over the course of a year. Moving to residential care would have a devastating impact on William and his family.

You might think that families should have easy access to help with adaptations of this kind – but the research being undertaken on behalf of Cerebra by students at the School of Law, University of Leeds, suggests that this is not the case.

The law entitles families to Disabled Facilities Grants (DFGs) for such work and the Government has significantly increased the allocation of these funds.  And yet some families experience great difficulty in obtaining support of this kind because councils (contrary to the law) are refusing to provide extensions for autistic children who don’t have any mobility problems.

The student researchers are working with a local disabled people’s organisation – the Access Committee for Leeds – to assess the cost effectiveness of DFGs provided to families with autistic children to cover the cost of providing home adaptations.  They are visiting and interviewing families who have had adaptations and families who are in desperate need of such grant support.  Their report will be published in February 2017.

For further information, contact Sorcha McCormack at S.M.McCormack1@leeds.ac.uk.

You can find further information about the Cerebra Disabled Facilities Grants Research Project  (DFG Project here).

Magical Christmas at Covent Garden

On 22nd December, we held our ‘Christmas at Covent Garden’ concert at St Paul’s Church in London. Guests were treated to stunning performances from Hywel Girls’ Choir and Hywel Boy Singers and the Angelicus Chorale who comprised of Hannah Seward (soprano), Lauren Williams (soprano), John Hywel Williams (conductor), Huw Tregelles Williams (organ), Jane Jewell (piano), Gareth Hamlin (percussion), Jeremy Hywel (voice of Christmas).

We raised over £800 in donations on the night, with members of the iconic Chelsea Pensioners leading the way with their collection buckets!

It was a genuine delight to see how much everyone enjoyed the festive atmosphere, (as well as the mince pies and mulled wine) but the standing ovation that the choir received at the end of concert was the icing on the cake.

A massive Cerebra thank you to everyone who played a part in making the evening such a special event! We’ll be hoping to hold another event like this in 2017 so keep you posted! Here’s just a few of the photos:

We would like to say an extra special thank you to our sponsors, without who this event wouldn’t have been possible:

hyphen law



leigh day

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