Tag Archives: mental health

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.

Mental Health and Well-being Conference Write Up

Improving Mental Health and Wellbeing for Young People with Autism, ADHD and Learning DisabilitiesOn the 28th April 2016 we held our Annual Conference at the Royal Society of Medicine in London on ‘Improving Mental Health and Well-being for Young People with Autism, ADHD and Learning Disabilities’.

Our aim is to make sure that the needs, and voices, of young people with these conditions are not lost in the current discussion surrounding mental health.

With the exceptionally high calibre of professional speakers, including a number of young people and the variety of topics covered, hopefully delegates felt that they enhanced their knowledge and understanding by attending our Conference.

The first session of the Conference was ‘Risks to mental health and well-being in children and young people with a neurodisability’. This part looked at the current research that is being conducted around genetic and biological causes of mental health disorders, mental health problems in children with intellectual disability and co-occurring psychiatric disorders in children with Autism Spectrum Disorder. The speakers in this session were:

Dr Andrew Cuthbert (Institute of Psychological and Clinical Neurosciences, Cardiff University)

Professor Richard Hastings (Centre for Educational Development, Appraisal and Research, University of Warwick)

Professor Emily Simonoff (Institute of Psychiatry, King’s College London)

After a superb lunch, the keynote address centred on ‘Mental Well-being and involving young people in defining the agenda’. This presentation was given by:

Dr Cathy Street (The National Children’s Bureau), accompanied by Jack Welch and Kiri Joliffe (NCB Young People Advisory Group)

This session focused on the benefits of children and young people’s involvement and participation in mental health and a short video was shown where young people talked about what it means to grow up happy. Both Kiri and Jack spoke, very bravely, of their own experiences of living with mental health issues and autism. They also stressed the importance of listening to young people.

Following a short break, the final session ‘Working to improve mental health and well-being’ comprised of talks given by:

Mair Elliot

This remarkable young lady gave an extremely powerful and moving speech about her own experiences of living with autism, mental health issues and psychosis.

Dr Jane Waite (Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham)

Jane looked at how to spot the signs of anxiety disorders and effective interventions.

Dr James Cusack (Autistica)

James provided an update on the research projects that the charity are currently funding into mental health in autism.

Professor Tasmin For and Dr Astrid Janssens (University of Exeter Medical School)

Tasmin and Astrid gave details of a new project focusing on what happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children’s services to adult services which will use national surveillance, qualitative and mapping studies.

At the end of each of the sessions the Conference Chair, Professor Stuart Logan (Cerebra Professor of Paediatric Epidemiology, PenCRU at the University of Exeter), fielded questions from delegates which gave them the opportunity to clarify matters arising from the presentations. The speakers were able to answer these questions clearly and make the subject matter understandable.

You can watch the Q&A sessions here.

Additionally there were a number of exhibitors at the Conference who included Leigh Day, Hyphen Law, Tomcat, A Stitch Different, The Clarity Partnership, Autistica and The Challenging Behaviour Foundation. Alongside these there were information stands for our Academic Chairs at: University of Birmingham, Cerebra Innovation Centre, University of Exeter, University of Leeds and University of Warwick. Information was also available regarding our Family Research Ambassadors Projects.

Cerebra would like to thank all of the speakers and exhibitors for giving up their time to join us on the day. We are particularly grateful to have received sponsorship from:

  • Leigh Day
  • Foot Anstey
  • Hobbs Rehabilitation
  • Lyons Davisdon
  • Hyphen Law
  • Tomcat
  • Autistica
  • The Challenging Behaviour Foundation
  • A Stitch Different Community Group
  • The Clarity Partnership

Give me the support I need and watch me thrive

Mair Elliott

Mair Elliott

Nineteen year old Mair Elliott gave a passionate speech at our recent conference on ‘Improving Mental Health in Children with Autism, ADHD and Learning Disabilities‘.

Mair was diagnosed with autism aged 15 after experiencing severe mental health problems. At the conference she shared her experiences:

“Truth be told when I was asked to speak to you today, I was a bit intimidated. I don’t have a fancy doctorate, I don’t even have a degree and I haven’t been doing any experiments in my lab. I am not in charge of any services, I don’t represent any particular organisation standing in front of you here today.

But what I do have is an Autism diagnosis, and I have diagnoses of Depression, Anxiety, Anorexia Nervosa, and Psychosis. We could argue that maybe I am the most qualified to talk at a conference about neuro-disability and mental health.

I started to feel different at 6 years old. I realised I could see the world in a different way to my peers, I noticed that my fellow classmates could communicate in a way that I couldn’t understand. This left me with an uncomfortable exposed feeling, and even at six years old I knew that being different made me vulnerable, which led to me deciding to learn to be ‘normal’, whatever that is. I suppose in true Autism form I decided to do this without including or informing anyone how I felt or what I was doing.

I learned by watching other children, observing their body language, facial expression, hand gestures, tone of voice. And then I copied, as I grew up I become more able to be intelligent in the way I did this, I could test hypotheses, I could notice patterns, I could create flow charts and diagrams in my mind to navigate socialising. It worked well and I went along in life with no one catching on and realising I was different.  Even though that was what I was aiming for at the time, it also had some side effects. I grew up thinking I was a failure, I grew up thinking that my true self was a disgrace, something which should be hidden away.

It was when I reached 14 years old that the cracks began to appear. I started to feel quite low, and got unusually anxious over certain things. I actually brushed it off thinking it was just teenage angst, I ignored what was going on in the hope it would just go away. But when I went into year 10, the beginning of GCSEs, things went downhill rather quickly.

It reached a point where I was in the depths of depression, I felt as though I was sinking beneath an ocean desperately trying to breathe and the weight of water pushing me down. The anxiety I had was never-ending, constantly in a state of red alert. Having anxiety is a bit like when you’re home alone and suddenly you hear noise coming from somewhere else in the house, your thoughts start racing, you can hear your heart pumping faster and faster, a lump of fear and dread weighs down our ribcage and freezes your airways. For someone with Anxiety, that feeling never stops.

My appetite diminished and my ability to complete even simple tasks faded away.  I couldn’t sleep because my brain wouldn’t switch of. The only relief I could find came from self-harm. Self-harm acted as a conversion from emotional pain into manageable physical pain. All of this added upon the utter confusion and disorientation I had over how I was feeling and what was going on in my head.

The school noticed very quickly that I needed specialist help and referred me to a primary mental health nurse. I think I saw the primary nurse twice before he then decided I needed more specialist help again.

I started seeing a psychiatrist every couple of weeks in specialist CAMHS. I was very very lucky that I wasn’t put on a waiting list, to this day I am unsure why or how I managed to bypass the waiting lists. I wish I could share that secret with you, but I have no idea what it is. I was diagnosed with Depression and Anxiety to begin with. But my psychiatrist noticed that there was something underlying and pursued an Autism assessment. I was very lucky to be able to jump the waiting list for that as well, because in my local area the waiting list was something like 7 years long. I was diagnosed with Autism when I was 15 years old.

Getting a diagnosis explained to me why I had felt so different. It helped me to realise that I was not a failure, and it helped to explain why I found this world so overwhelming. Getting a diagnosis was the very first step in my journey to self-awareness. But by then mental illness had a firm grasp on my life.

I was put on a variety of medications, none of which had the desired effect, I had a course of CBT which although helped somewhat it wasn’t nearly as impactful as was required. Over a year I continued the descent, it got the point that I was having panic attacks daily in school and full on out of control meltdowns in the middle of the school corridors. I spent many evenings sat in A+E because I had self-harmed or was very suicidal. I started getting hallucinations, I heard voices which shouted derogatory comments at me, and I saw people who I believed were going to hurt me or my family. I had no control, and was detaching from reality.

It was decided that community CAMHS couldn’t support me, and I was hospitalised. I was actually in a psychiatric unit across the river from here in the Maudsley, which is actually about 5 hours from my house. I spent 3 and half months there before being transferred to a unit slightly closer to home, where I spent about 3 weeks.

Community CAMHS didn’t react in the best way to my discharge and I didn’t actually see anyone for at least 6-8 weeks after being discharged.  I relapsed over the next 6 to 8 months and became engulfed in the bitter and cold world of Anorexia Nervosa. I was almost to the point of being put back in hospital, until one day I had an epiphany style moment when I collapsed on my bathroom floor. I realised that I didn’t want to live my life jumping from hospital to hospital, I didn’t need to surrender myself to illnesses which made my life hell, I didn’t need to be in pain.

From that point onwards I pushed and fought for the things that I knew would help me, like Dialectical Behaviour Therapy, Family therapy, no medication.  I worked hard to break free from the illnesses which ruled my life. Two years on and I can stand in front of you to tell you my tale.

We all are probably aware of the downfalls associated with CAMHS. Long waiting times, lack of access to the right treatments, overuse of medications, lack of family involvement, lack of local inpatient facilities, changing staff, lack of communication between different services, poor resources and funding, etc. I have experienced pretty much all of those things, and felt the impact these issues can have on someone already suffering. Effects like distrust and inability to build therapeutic relationships with practitioners, not being able to feel safe or comfortable in the environment, disjointed support and having to repeat my story over and over, having to go hundreds of miles from my home for appropriate care, my family being treated like a problem rather than part of the solution.

Living with a disability is hard, living with mental Illness is hard, getting help should be easy.

I want to bring up at least one positive point about CAMHS and that is how hard the staff work despite not having the resources necessary to do everything that is asked of them. It’s easy to place blame on individuals when nothing seems to be going right. I know how hard community and hospital CAMHS staff have worked to look after me over the years.

The truth is some things in this world are going to be more difficult for me, I will probably always walk the tightrope above the chasm of mental illness. I do need extra help with some things in life compared to other people. My autism brain is not fully compatible with a neuro-typical world. To deny all of this would be foolish, and I would be setting myself up to be disappointed. But give me the right conditions, teach me the right things, give me the right kind of help, watch me thrive.

I am 19 years old and so far I have contributed to Welsh Government’s enquiry into children’s mental health services in Wales, which lead to an extra 7.6 million being ring fenced for the service each year, I have done 2 current affairs programmes which aired on Welsh national television, one of which won a BAFTA Award and is shortlisted for the Celtic film festival.  I have spoken at conferences, seminars and events of all shapes and sizes, I have spoken about young people’s mental health in the Welsh press on many occasions. I have co-written a report on the wellbeing of children and young people in Wales which has been widely endorsed, including by Welsh Government. I am a trustee of a Wales wide charity which supports over a 1000 people with serious mental illness and their families. Cardiff University’s National Centre for Mental health and I was commissioned to undertake a research project in my county looking into the experience of young people with Autism in secondary schools.

I recently visited my old school, where I went through a lot of the dark times over the past years. Seeing that place again, walking the corridors and speaking to the people made me realise how far I have come. I could be modest and say that it was nothing, any one could have done what I have done, but actually, I worked hard to be where I am today. I kept taking steps forward when all I wanted to do was give up. I fought for myself and for all of the other young people in Wales in similar situations, I have opened up to thousands of people about my diagnoses, I have faced stigma, misconceptions, stereotypes and ignorance. I have faced things most of my peers couldn’t even imagine, yet I have achieved more before the age 20 than some people do in a lifetime.

I am not ashamed to have Autism, I am not ashamed to have mental health problems.

My Autism makes me a driven, hard-working, passionate person. It means I have high standards and will complete any task that is asked of me at the highest quality I can possibly manage. It makes me organised, honest and authentic.

Having been through mental illness has taught me to appreciate the little things, like eating a bowl of cereal in the morning, the sound of the wind through the trees, and the ability to smile and be happy.

I no longer see my differences as a failure on my behalf, I see them as a blessing.

Don’t lose hope when you feel that life is throwing too many obstacles in your face, don’t lose hope for your sons, daughters, siblings, parents, friends, clients – when the right conditions are eventually found it will all have been worth it.

Thank you for listening”.

You can watch the video of Mair’s presentation here.

Mair has written several articles for us – “Being a woman with Autism“, “Autism and Mental Illness” and “Puberty and my Autism Diagnosis“.

News – January 2016

A stack of newspapersOur monthly round-up of news, legislation and cautions relevant to families who have children with brain conditions.

Mental Health Investment
The Mental Health Services and Schools Link Pilots, in 22 areas of England, are to test proposed improvements to mental health services for children.  (Dept for Education).

Legislation

SI 2015/2005, The Civil Legal Aid (Merits Criteria and Information about Financial Resources) (Amendment) Regulations 2015
Amendments to the criteria for entitlement to legal aid.  Includes some issues affecting children and families.  Applies to England and Wales.

2015 No. 2041, The Council Tax Reduction Schemes (Prescribed Requirements) (England) (Amendment) Regulations 2015
From 14 January 2016, requires local authorities in England to arrange their new schemes.  These potentially have an impact on families where there is a child with special educational needs / disability.

2015 No. 428 (C. 56), The Welfare Funds (Scotland) Act 2015 (Commencement) Order 2015
From 1 February 2016 (for some parts) and 1 April 2016 (for the remainder), brings into force regulations and other parts of the Act that are not already in force.  The Act allows for emergency payments to individuals by local authorities, now that the Social Fund is not available.

2015 No. 444, The Victims’ Rights (Scotland) Regulations 2015 came into force in December 2015
An implementation of European Directive 2012/29/EU establishing minimum standards on the rights, support and protection of victims of crime.

2016 No. 21, The Adoption and Children (Scotland) Act 2007 (Amendment of the Children (Scotland) Act 1995) Order 2016
From 15 January 2016, changes to the regulations about court orders.

2015 No. 1989 (W. 299), The Partnership Arrangements (Wales) Regulations 2015
The regulations set out now local authorities and local health boards are to work in partnership for specified health and social services functions. To do this, they are to form seven regional partnership boards and share information with integrated family support teams.

2015 No. 1988 (W. 298), The Children (Secure Accommodation) (Wales) Regulations 2015
From 6 April 2016, requirements in relation to the placing of children into secure accommodation.

2015 No. 1843 (W. 271), The Care and Support (Charging) (Wales) Regulations 2015
From 6 April 2016, regulations relating to charges that local authorities can make towards care and support services for adults.

2015 No. 2006 (N.I. 1), The Welfare Reform (Northern Ireland) Order 2015
Adjusted rules for various welfare benefits and entitlements.  Partly in force already, partly expected to be in force on dates yet to be determined.  Works in conjunction with the Northern Ireland (Welfare Reform) Act 2015, of last November.

SR 2015/407, The Disabled Persons (Badges for Motor Vehicles) (Amendment) Regulations (Northern Ireland) 2015
Further amendments to the Disabled Persons (Badges for Motor Vehicles) Regulations (Northern Ireland) 1993.

2015 c. 10, The Children’s Services Co-operation Act (Northern Ireland) 2015
An Act mainly to require co-operation among certain public authorities and others towards the well-being of children and young people, and the adoption of a children and young persons strategy by the Executive.

Cautions

Newborn babies in cars
A hospital in Oregon watched about 300 parents of newborn babies as they put their baby in the car to go home.  They found that over 90% of parents made serious errors of positioning, and advise that parents learn how to do this beforehand.

Using steam to ease children’s colds
Surgeons have recommended not using this traditional method, after treating a number of children for burns sustained as a result.  They note that it is still sometimes recommended by people that parents would listen to.

Autism and Mental Illness: a Teenager’s Perspective

Mair Elliott

Mair Elliott

Mair Elliot shares her experience of living with both a mental illness and Autism.

“Since 14 years old I have had doctors, psychiatrists, psychologists, therapists, nurses, occupational therapists, dieticians, support workers, counsellors… and various other professionals poking and prodding at the psychological mess in my head. I have tried more medications I than I can count on my hands, and I have taken more pills than I’d care to divulge. I have tried talking therapies upon talking therapies, some of which I know so well I could easily facilitate a course for someone in need (but I won’t).

Some people may find my recent decision to reduce the professional help I receive currently to just a phone call once a month a bit risky or odd. But the truth is I have never been able to develop strategies to help myself by myself. Falling ill during my teenage years resulted in me not only missing a heck of a lot of school, but I also missed out on the opportunity to discover how I would live my life, how I would be me, and even who I was/am. I was told how I was supposed to live my life, or I was told what was ‘healthy’. Which was fine during the time I was incapable of looking after myself.

But now I am able to look after myself, at least at the basic level. What I find frustrating is that the generic advice given to me from almost all of the people I have met, is not actually moulded in a way I can live with. Don’t get me wrong, I needed professional help to keep me alive, and I will always be grateful for the tireless efforts of the professionals, and people who had to deal with me during a very dark time in my life. But I have encountered an illusion which I believed was real for a very long time.

Let me create a metaphorical example, I am assuming that all of you have seen circus workers/clowns/or pretty much anyone create balloon animals. Well let’s say that when I was ill I was just an empty balloon. Getting professional help and advice meant that I could fill my balloon with air. It’s better than it was before, because at least now it’s inflated, but it’s just a long thin balloon. In order for it to become a balloon animal I have to twist, turn and mould the balloon until it’s an animal like shape. The only thing is, I don’t have detailed instructions, only very brief outlines.

Over the years I have been given some helpful advice on how to live my life in a healthy and happy way, but I need to take that advice and personalise it. I need to work out how that advice is going to fit into my life, and the way I live it. I need to work out which advice I have been given is going to work for me, and which advice is not going to help me.

When I discovered I was ill, I made the assumption that all I needed was a bit of therapy and possibly a bit of medication, and then I would be back to exactly who I was before I fell ill, or even a better version of who I was. I was naïve enough to believe that I would get better and be completely 100% healthy, and my life would be amazing and sparkly. I also thought that getting better was just a straight line on a graph upwards (anyone who’s been to therapy will understand the graph of recovery comment I just made).

After 10 weeks of therapy and several failed attempts of trying medication, you’d think I would have realised that this wasn’t the case, or at least when a year had gone by and I ended up living on a psychiatric unit. But the truth is I didn’t realise that I wasn’t going to make some miraculous recovery for about 3 years.

When I had this realisation I could finally takes steps towards recovery. I understood for the first time that I was going to have to put myself out there, and pretty much expect to fail continuously until I worked out ways that I could cope with life. As an obsessive perfectionist it was not a comfortable realisation, but I knew that I was going to have to work hard, and that I was going to have to accept that I was not going to do well in every step and decision I had to make. Sometimes I was going to fall down or get sucked back into old ways, and I had to be OK with having a recovery graph that looks more like a squiggle on page than a logical and tidy straight line upwards.

And this is why I don’t believe in full recovery. I can always be getting better, I can always be improving things for myself. Full recovery suggests to me that there is an end to this journey, and I don’t want that to be the case. I will always be Autistic, I might reach a point in which I am symptom free from my mental illnesses. But that won’t mean that I won’t still face challenges, in fact I know I will definitely face challenges because being Autistic sometimes in not easy.

I have gotten to the point now where I have addressed the fundamental problems I faced when I was ill, such as not eating, self-harming and self-destructive behaviour. I had the expertise of professionals to help me get to this point. But now I have to address the issues I face with life outside of my illnesses. Issues like how do I deal with Autism and maintaining professional and personal relationships, what is it that I really enjoy and how can I make it a career, what is it that helps me be happy and healthy, and most importantly what are the things which I cannot change and how can I come to accept them.

In order to work out answers to my questions, in order for me to live a long and happy life, I believe I need space now to explore. So that is why I have decided to reduce the professional help I receive down to a phone call once a month. I know when I need to ask for help, and I understand that my journey is far from easy, but for now I know this is the right decision for me.

If I have learned anything from the past few years is to never take the simple things for granted, like the love and support from family and friends, or the ability to smile and be happy”.

Mair gave us full permission to publish this article which first appeared on her blog.

You can also read Mair’s article “Puberty and My Autism Diagnosis”.

Consultations – December 2015

Consultations are your chance to give big organisations like the NHS and other government bodies your opinions on things that matter to you to. This is our monthly round-up of open consultations that might be of interest to our members.

Researchers at Royal Holloway College, University of London
are looking for first-time fathers of infants aged 3-36 months, for a study about fathers’ experience during labour and birth.

Draft guidance for police in handling people in mental health crisis
Comments are invited by 1 January 2016.  Details:  (College of Policing).

Resources – September 2015

ResourcesAutism Connect
Internet blog for anyone involved with autism to share thoughts and information. Also links to a free e-learning course. An iOS App version with many of the features (not the course) can be downloaded from iTunes by searching on “Autism Connect”. (Autism West Midlands).

University and epilepsy
A series of articles about preparing to go to university for young people with epilepsy, (Epilepsy Society).

Kern County Concussion Consortium
Practical information about concussion, mild brain injury and aftercare, with links to further resources.

Personal Emergency Response Service
Carers UK have a special offer on the wearable “Buddi” personal emergency service (for the cared-for person).

Improving school readiness: creating a better start for London
A document that would also show parents what is considered to make a child “school ready”.

Special Educational Needs
A collection of FAQs and short legal items about special educational needs, (Douglas Silas solicitors).

Universal Credit and Families: questions and answers
Government guide clarifying various questions asked by families that might be entitled to Universal Credit, (Dept for Work and Pensions).

Template letters
A new Template Review Letter and guidance notes, for parents wishing to ask the DWP to review a decision to stop DLA payments for a period when a child has been in hospital. These are Word documents, accessed by going to the Contact a Family website, www.cafamily.org.uk and entering the words ‘template review letter’ into the search box.

Catalogue of health-related fuel poverty schemes
Document listing local schemes to assist households that want energy efficiency measures (e.g. warm home schemes, Care & Repair). Many of these schemes include households with a disabled member, (Dept of Energy and Climate Change).

What to do before, during and after a flood
Includes information about dealing with insurance companies, and further contacts for emergencies (Environment Agency).

Moving into work
Employment and childcare rights for families in England, Northern Ireland, Scotland and Wales. Booklet from Contact a Family.

Care to Learn
Care to Learn is a UK programme of support including childcare costs for parents under the age of 20, to enable them to study, (Student Bursary Support Service).

Pregnancy and Mental Health
A set of resources about mothers’ mental wellbeing in pregnancy, (Tommy’s: your online midwife).