Tag Archives: mental health

Improving the mental health of children with brain conditions

We are launching a new project to help families of children with brain conditions access timely and appropriate mental health services. It’s aimed at families of children with rare developmental brain disorders, with a genetic cause, that carry a high risk of them developing conditions such as ADHD, autism, or schizophrenia.

We are working with The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) at Cardiff University on the project. The project will use the expertise developed at Cardiff to inform parents of the risk factors, challenges and behaviours their child may experience and give them the knowledge they need to seek early support. The project also aims to encourage genetic and mental health services to work together for the benefit of children and families.

As genetic testing becomes even more effective, cheaper and informative the numbers of children receiving a genetic diagnoses will increase. Over the last 10 years Cardiff University has built one of the largest and most detailed studies of individuals with these rare brain conditions. They have gained major insights into their development and the early indications that individual children might be autistic, have ADHD, or develop schizophrenia. The earlier we can intervene to support the child and their family the better the long term outcomes are likely to be.

We want to ensure that we have the evidence based information to pass onto parents in a way they can understand and use to make informed choices about what is best for their child and their family and to access timely and appropriate mental health services. At the same time we will work with clinicians so that they understand that these children face greater risks and challenges and should be able to access services at the earliest opportunity.

The understanding of genetic causes for brain disorders has many potential benefits for families, doctors and society. Genomic medicine promises greater opportunities to:

  • develop new treatments based on an individual’s biology and more precise diagnosis.
  • provide better information on anticipating and preventing serious mental and physical health impacts.
  • help parents, doctors, educationalists and wider society to better understand the underlying causes and consequences of developmental brain disorders, confronting some of the stigma and discrimination children and their families continually face.

As part of this project we will:

  • Identify other voluntary organisations with overlapping interests and involve them in the stakeholder advisory panel.
  • Develop strong partnerships with small condition specific support groups developing cooperative approaches to sharing and developing information resources.
  • Use our current skills, capabilities and family contacts to develop high quality accessible multimedia resources for families.
  • Work collaboratively with service providers to develop and test a model way of working to achieve improved health and education outcomes for children. An approach that can be shared and developed across authorities.
  • Contribute to teaching and training at the University Medical School, ensuring future generations of clinicians are better equipped to deliver services to help children with intellectual and developmental disorders in harmony with the wishes of their families.

We are currently recruiting a coordinator for this work who will hopefully start in January 2019. In the first instance our work will be focused in Wales, but will be rolled out across the UK as the project develops.

Two thirds of the cost of this ground-breaking and very exciting new project is being met by the Welsh Government and Innovate UK with the balance needing to be raised through the generosity of our amazing supporters. Our contribution to this project, which will have far-reaching effects, is just under £2,000 per month for the next three years.

If you would like to be a part of something amazing and help make a real and lasting difference to the lives of children with brain conditions and their families then please make a donation towards the costs – your contribution, no matter how small, will help others. You can donate online or call us on 01267 244206.

We’d also love to hear from you if you are the parent or carer of a child with a  brain condition who is experiencing problems with their mental health. Please contact us on sarahj@cerebra.org.uk

Knowledge Transfer Partnership success!

We are delighted to announce that we have been successful in our Knowledge Transfer Partnership (KTP) bid with the Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University. This KTP is funded by Welsh Government and Innovate UK. This is what it is about.

What is a Knowledge Transfer Partnership (KTP)?

The Knowledge Transfer Partnership (KTP) scheme helps businesses in the UK to innovate and grow. It does this by linking them with an academic or research institute and a graduate. A KTP enables a business to bring in new skills and the latest academic thinking to deliver a specific, strategic innovation project through a knowledge-based partnership.

Each KTP is a 3-way partnership between:

  • a UK-based business or a not-for-profit organisation
  • an academic or research institute
  • a suitably-qualified graduate, with the capability to lead a strategic business project

We have support from Cardiff and Vale NHS Trust, Cardiff Business School and The National Centre for Mental Health (NCMH) at Cardiff University. The KTP will allow us to develop new skills that we can use in other ongoing Cerebra work, and vice versa. The skills we have learnt from other Cerebra projects will also be beneficial in this project. The KTP has synergy with our academic partnerships with the universities of Birmingham, Warwick and Leeds.

Who are the Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University?

The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) conduct high quality research into neurodevelopmental disorders and mental health problems. A main research interest is to learn more about the early origins, development and impacts of neurodevelopmental and mental health problems on children, young people and their families.

Their overall aim is to improve prevention, interventions and policy. The experiences of people with copy number variants (ECHO) study group within the Institute is led by Professor Marianne van den Bree and focuses on people with genetic conditions caused by chromosome changes called ‘Copy Number Variants’ (CNVs).

The Project

The project aim is to develop more effective ways of ensuring families of children with intellectual and developmental disorders (IDDs) have greater access to modern personalised genomic and integrated psychiatry services according to parents’ needs and preferences.

The project focuses on children and young people with CNVs. Some children with CNVs have a small segment of their DNA repeated (a duplication), other may have a segment missing (a deletion). Some CNVs appear to have little or no effect on children’s health or development, but some can be very serious. CNVs are a significant cause of learning difficulties, developmental delay, serious medical health problems and increased risk of psychiatric disorders, such as ADHD, autism, of schizophrenia.

Our project aims to develop more effective ways of ensuring children with intellectual and developmental disorders (IDDs) have greater access to modern, personalised genetic and integrated psychiatry services according to parents’ needs and preferences. This KTP aims to transform our capability to support families of children with these genetic disorders by taking advantage of new knowledge and capabilities from the Cardiff University Institute of Psychological Medicine and Clinical Neurosciences to develop new solutions and joint partnerships that will bring lasting benefit to thousands of children and their families.

The Chief Medical Officer’s report 2012 on children with IDD stated many disabled children have serious difficulties accessing statutory services, and inadequate co-ordination within and between services is a major concern. Our own Accessing Public Services work certainly supports this finding. The Welsh Government’s Strategic Plan for Rare Disorders is committed to promoting equality of access for everyone with a rare disease to follow clear care pathways providing high quality services through integrated personal care plans. This KTP will address the problems identified by The Chief Medical Officer and contribute to turning the Welsh Government’s strategic goal into a reality for children and their families.

This KTP has the opportunity to benefit at least 3,500 children in Wales with rare developmental disorders attributed to CNVs. In England over 10,000 children per year are diagnosed with CNVs. As genetic testing becomes even more effective, cheaper and informative the numbers of children receiving genetic diagnoses will accelerate. The long-term potential impact of this KTP is therefore significant in this emerging branch of medicine. Knowing which CNVs carry risk of debilitating psychiatric illness; understanding environmental influences; and being able to recognise key signs of high risk will help earlier and more appropriate intervention. Thus, this KTP has the opportunity to improve longer term outcomes for children and their families.

The ECHO study research team consist of world leading academics and clinicians. Over the last 10 years it has built one of the largest and most detailed studies of individuals with CNV internationally. Studying these children over time, major insights have been gained into their development, strengths and weaknesses. In harness with our expertise around working with families and developing award winning information resources this partnership will further Cerebra’s goal of maximising the empowerment of anxious families to access the best care for their children and also enable us to engage with and influence multi-disciplinary services on behalf of children with intellectual and developmental disabilities.

The KTP will develop efficient cross-disciplinary working between Cerebra, IPMCN, Cardiff Business School, and The National Centre for Mental Health and statutory and voluntary sector partners. We will pilot new approaches within Cardiff and Vale NHS trust with the long-term aim of advising and supporting other NHS Trusts to adopt similar approaches thus improving outcomes for children and their families.

As part of this KTP we will:

  • Identify other voluntary organisations supporting children with IDD and involve them in the stakeholder advisory panel.
  • Develop strong partnerships with small condition specific support groups developing cooperative approaches to sharing and developing information resources.
  • Use our current skills, capabilities and family contacts to develop high quality accessible multimedia resources for families.
  • Work collaboratively with service providers to develop and test a model way of working to achieve improved health and education outcomes for children. An approach that can be shared and developed across authorities.
  • Contribute to teaching and training at the University Medical School, ensuring future generations of clinicians are better equipped to deliver services to help children with intellectual and developmental disorders in harmony with the wishes of their families.

Costs

Two thirds of the cost of this ground-breaking and very exciting new project is being met by the Welsh Government with the balance needing to be raised through the generosity of Cerebra’s amazing supporters.
Our contribution to this project, which will have far-reaching effects, is just under £2,000 per month for the next three years.

If you would like to be a part of something amazing and help make a real and lasting difference to the lives of children with brain conditions and their families then please make a donation towards the costs – your contribution, no matter how small, will help others.

You could call Debbie on 01267 244206 to make a one off or regular donation or donate on-line. Our website also has some great fundraising ideas.

How to look after yourself

We know from research that parents of children with a learning disability can be twice as likely to experience high stress levels as do other parents. High levels of stress can have a negative impact on your well-being.

In this article we look at some ways that you can look after your own well-being. Not all of these will work for everyone, and there could be some trial and error involved while you find what works best for you. This article is taken from A Parent’s Guide: Improving the well-being of young children with learning disabilities.

We know that the simplest things, like eating healthily, getting enough rest, and exercising regularly can be the most difficult when caring for a child with a learning disability. But it is important to do these things to look after yourself. Most parents we spoke to said that sleep was the most difficult thing for them to do. Addressing your child’s sleep issues will help you get a better night’s sleep. You might need some help from others when you try to deal with your child’s sleep difficulties. Cerebra have a team of sleep practitioners who can offer help and advice about children’s sleep problems.

You could try to make some small changes that can benefit your own and your child’s well-being. Parents and practitioners advised that some examples of small changes are:

  • Putting on some music that you enjoy and sing or dance to it
  • Thinking about short journeys that you can walk, instead of driving
  • Thinking back to the things that you most enjoyed before you had children (e.g., playing sports, going out with friends, reading), and trying to think of a creative way to fit some of them back into your life.
  • Trying something new that you’ve wanted to do for a while. The parents we spoke to said that this could be a good way to meet new people as well.
  • Find someone who can support you to have short and regular breaks to do something you enjoy (e.g., having a quiet cup of tea, going for a walk.

It might help to talk to other parents who are going through a similar experience to you. You could join a support group for parents of children with disabilities. Some of the parents we spoke to said that they were members of online support groups and parent groups on social media; they said that these were really good to get support from people who are similar to them.

We know from research that using mindfulness and meditation, can help to improve parental well-being. Mindfulness might also help us to make practical changes after practising it for some time as we are less likely to be reactive in stressful situations. There are courses available on mindfulness and these might help to get you started. Some of the parents we spoke to said that parents could use mindfulness or meditation apps on their phones, and this might be easier to do than going on a course.

Parents tell us that trying to take regular breaks from your caring responsibilities to look after your own health and well-being is also very important. You could ask family and friends to help out, or ask your Local Council for guidance about respite support. Parents we spoke to said that help is out there, and taking some time to find it can give you the time in future that you need to look after yourself. All parents said that time was the best resource when they are trying to look after themselves.

Trying to make time for yourself might feel impossible, especially when your child is young or has complex needs. But looking after yourself is not time out from caring for your child. It is an investment that supports you, your child, and your unique relationship.

Some parents that we spoke to said that even really short breaks can help them to look after themselves. This might be more manageable for some families.

We spoke to parents of children with a learning disability about some other ways that they look after their own well-being:

“I try to see a friend one evening a week, and get caught up with them. There are nights where I sit down and I am too tired, and don’t want to go, but it is worth it for that bit of sanity and get out and be with my friends and catch up.” A mother of a two and a half year old boy with Down’s syndrome
“I enjoy playing football, and that’s my own time a few nights a week if I’m not working. I find it hard to find time sometimes, because I work full-time.” A father of a three year old boy with a learning disability
“It’s not easy to fit everything in. We have to roll with it, and take time for ourselves whenever we can. We usually take time when we have dropped our daughter off at nursery to get a bite to eat, or spend some time with the other parents [of children with learning disabilities].” A mother of a three year old girl with a learning disability

 

‘A Parent’s Guide: Improving the well-being of young children with learning disabilities’ is a collaboration between the University of Warwick, Cerebra, Mencap, the Challenging Behaviour Foundation, and parents of children with learning disabilities.

The booklet has been created to help parents support the well-being of their young child with a learning disability (aged 0 to 5), but parents of older children may also find it useful.The guide contains helpful information on:

  • Chapter 1: How to look after yourself (Parental well-being)
  • Chapter 2: Organising family life
  • Chapter 3: Spending time together
  • Chapter 4: Activities to do with my child with a learning disability at home and outside

Autism and mental health – one family’s journey

“My daughter, Mair, is autistic with severe and enduring mental health difficulties. She was diagnosed with autism 6 years ago when she was 15. She was referred by her school and diagnosed through CAMHS (Child and Adolescent Mental Health Services) because she had developed serious mental health problems.

My family have been on a roller-coaster ride of suicide attempts, A&E Admissions, Psychiatric inpatient admissions, discharge and recovery, relapse and re-admission, securing support, losing support, progress followed by decline followed by progress, understanding and lack of understanding from others, hope and fear and hope again. The most difficult thing has been dealing with shattered hope; I would be better off if I did not hope, but that would be to give up and I will never do that. I live in dread of withheld numbers calling my phone (the NHS and Police call like this) in trepidation of what I am about to be told.

I could write a dissertation on the failings of mental health services. During Mair’s last inpatient admission, she absconded from the ward on several occasions despite being on a cycle of 15-minute checks, once it took 45 minutes to notice she was gone. Twice, while she had absconded she took an overdose of paracetamol and ended up in A&E. This is while we, her family, thought she was safe. The main reason behind her admission being to keep her safe. On discharge from hospital, the psychiatrist acknowledged that Mair would probably go into crisis again. This is terrifying for us as each crisis results in more serious self-harm and more suicide ideation.

Our story has been characterised by delay and poor communication between services and even within services. In our experience, the professionals caring for Mair have not spoken to each other, staff turnover and lack of inter agency working has meant we have had to repeat our story many times, wasting valuable appointment time as well as being extremely frustrating and confusing. I have needed to be an advocate for my daughter, and as she has become an adult, she has had to become her own advocate as services are hard to access and we have had to push. The crux of the problem is that, despite political rhetoric, mental health services are not on an equal footing with physical health services. My daughter has life threatening mental illness; if she had life threatening physical illness, our experiences would be different. There would be fewer delays in getting treatment for one thing and more support for families.

Autism is different in girls. Girls are excellent at masking symptoms of autism, my daughter did this thereby her diagnosis was delayed. She knew she was different but did not know why; she developed elaborate masking behaviours that worked well at first, so well no one, including her family, noticed. This eventually became too much and she became mentally unwell. Those learned behaviours are now difficult to undo, not knowing what was wrong meant there was no understanding for Mair of why she was different, she came to her own conclusions and felt she simply did not belong. Early autism diagnosis is vital, even without support services to refer families to, as it aids understanding, awareness and acceptance of difference. I have witnessed medical professionals claiming that autism diagnosis is not a priority as there is nowhere to refer families post diagnosis. While this lack of services for autism is of great concern, it is misguided to not diagnose as it fails to recognise the importance of understanding, awareness and acceptance. For my family I believe earlier diagnosis of autism could have minimised, maybe even prevented, the development of severe and enduring mental health problems. Like most mothers when things first went awry I forensically examined our family life looking for what I did wrong.

I switched between concentrating on past mistakes to worrying about future scenarios. This was unhelpful. I have come to accept that I made mistakes, but all parents get somethings wrong. I do not have a time machine to go back and change things so now I try to balance it with what I got right. In particular my children have always been loved, well cared for and the centre of our family. They always have and always will come first. Likewise, I try not to worry about the future, in particular to dwell on scenarios that might never come to be, this is exhausting and not constructive. Mindfulness principles have been helpful and I continue to try and practice them whenever things feel like they are spiralling out of control.

The hardest lesson for me as a mother has been to understand that I cannot ‘fix’ this. I need to work with service providers who have the expertise and experience to help, I’ve had to relinquish control. My role, I’ve come to accept, is to provide love, support and security every day and to work with the professionals. This is not easy, but I continue to preserver with varied success. It’s important, I believe, that the professionals listen to me and my husband and our concerns. We know Mair better than them. We have 24/7 care responsibility, they should be working with us. Nearly all NICE guidance talks about the importance of working with families but the reality in our experience has been quite different.

We have needed support on our journey and got it from local support groups and charities. I feel less isolated by talking with families who have similar experiences and a local mental health charity, Hafal, has been able to advise and support us during our bleakest hours. This external support has been vital to our well-being. Not everything has been a negative experience. Individuals have more often than not been caring and dedicated but over stretched by working in underfunded services.

Mair’s school, and more recently her college, have been supportive. I would single out Mair’s interaction with the police which has been outstanding, they have been truly lifesaving and acted with genuine kindness and understanding. As a family, we have become much closer. I know the people I can rely on for support and they are always there. My son is an extraordinarily thoughtful and considerate young man and Mair is an accomplished young woman, despite her struggles. She has achieved so much more in her 21 years than many people ever will. She addresses large conferences, participates in consultations, appears in TV and Radio interviews all to promote mental health awareness and tackle stigma. She has won awards for her work, most recently the St David Award for Citizenship.

We are a strong family unit that has stuck together and we will be OK, all of us.

Tracy

Working to improve children’s mental health

We are working on a joint funding bid with the Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University for a ground-breaking project on children’s mental health.

The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) conduct high quality research into neurodevelopmental disorders and mental health problems in children and young people. Their research aims to learn more about the early origins, development and impacts of neurodevelopmental and mental health problems on children, young people and their families. Their overall aim is to improve prevention, interventions and policy.

This Project focuses on developmental genetic conditions called ‘Copy Number Variants’ (CNVs). Some people are born with genetic changes called ‘Copy Number Variants’ (CNVs). In some cases a section of their genetic code might be repeated (a duplication), and in other cases a section might be missing (a deletion). Some CNVs appear to have little or no effect, but some can be very serious. Occasionally a CNV might even give someone better resistance to certain illnesses.Generally however, CNVs are a significant cause of learning and developmental disorders, some of which are linked to a higher chance of experiencing serious psychiatric disorders.

Our project aims to develop more effective ways of ensuring children with intellectual and developmental disorders (IDD’s) have greater access to modern personalized genomic and integrated psychiatry services according to parents’ needs and preferences. 

Research at Cardiff University means we know which CNV’s carry risk of debilitating psychiatric illness; understand environmental influences and are able to recognize indicative emerging behaviors and emotional difficulties. This knowledge, when shared, will facilitate earlier intervention that is more appropriate. Intervention that will improve longer-term outcomes for children and their families.

We will use this knowledge to empower anxious families to access the best care for their children and engage with and influence multi-disciplinary services for children with intellectual and developmental disabilities. This project will support the creation and implementation of new, highly innovative and locally tailored, Shared Decision and Referral Support Services (SDRSS) that link inter-agency communications and decision-making. These services will engage with and influence service providers as well as advising, and directly advocating for families in need of services.

As part of this project, we would want to develop strong partnerships with small condition specific support groups developing cooperative approach to sharing and developing information resources. Use Cerebra’s skills, capabilities and family contacts to develop high quality accessible multimedia resources for families. Work collaboratively with service providers to develop and test a model way of working to achieve improved health and education outcomes for children.

We will know shortly if our bid has been successful, so watch out for the press releases.

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”.