Author Archives: Elaine Collins

Disability related expenditure and pets care costs

A survey has found that many disabled people are unable to afford to keep a pet dog or cat due to the impact of council charges made for their social care support.

A survey of 46 English social services authorities found that eight out of ten would not make allowances for pet care expenses ‘in any circumstances’ when calculating the charges disabled people were required to pay for their social care services.

Background

For many disabled people their pet is of incalculable importance to their sense of well-being. Many experience severe isolation and for many their pet is their main companion. The report outlines the evidence suggesting that pets can have profoundly beneficial impacts on key measures of well-being: physical, mental and emotional – as well as providing for many a sense of security.

This research appears to be the first concerning the impact of local authority social care charging on pet owning disabled people living in the community.

Findings include:

  • Despite the evidence concerning the generally positive impact of pet ownership on well-being and the many social policy references to pet ownership as a potentially innovative mechanism for addressing eligible social care outcomes for disabled people, no local authority had a written policy concerning the treatment of such expenditure (para 7.07).
  • Only five authorities (11% of the sample) indicated that such costs could be taken into account ‘in any circumstances’ – although on analysis it appears that nine (19%) would in fact be prepared to consider such costs ‘on a case by case’ basis (para 7.07).
  • Local authority charges that ignore pet care costs will subject disabled people to severe hardship. After paying their council’s social care charge, disabled adults under pension age are likely to be left with no more than £75.25 per week (and in some cases as little as £48.17) from which they are expected to pay for (among other things) their food, gas, water, electricity, telephone bills, travel costs, clothing, house repairs, equipment purchase, insurance expenses and recreational activities (para 4.04).

The research recommendations include that the Secretary of State for Health and Social Care require that where reasonable pet care costs be taken into account for charging purposes (by amending the list of items in the Statutory Guidance at Annex C para 40).

The Research was undertaken by students at the School of Law, Leeds University as part of the School’s Cerebra Legal Entitlements and Problem-Solving (LEaP) Project and pro bono programmes under the supervision of Professor Luke Clements and Sorcha McCormack.

Download the full report (PDF)

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.

Overcoming sleep terrors

In this article we take a look at what sleep terrors are, give advice on how to overcome them and explain how our Sleep Service helped Rachel and her mum.

Like any other ten year old, Rachel was desperate to have a sleep over at her friend’s house. However, Rachel has autism and the anxiety she experiences meant that she felt unable to sleep without her mum in the bed with her. She had never managed a full night in bed by herself.

Her mum, Helen, was also concerned about Rachel’s screaming episodes during the night when Rachel would run around the house, appearing terrified and screaming, but unaware of her surroundings. Her GP explained to Helen that these were sleep terrors (sometimes called night terrors) and were likely to be just a stage that Rachel was going through.

Rachel’s sleep terrors sometimes happened twice during the night and Helen was worried about Rachel’s quality of sleep as well as the disruption caused to the whole family. Needing advice and support Helen contacted Cerebra’s Sleep Service.

One of our Sleep Practitioners, Pattie, gave Helen some information and advice on sleep terrors.

If your child is experiencing sleep terrors, it is important to seek medical advice to confirm the diagnosis and to rule out any other causes for the behaviour.

What are sleep terrors?

Sleep terrors are episodes that can that occur when a person is in a deep stage of sleep – usually within the first few hours of going to sleep. NHS guidance says that they most commonly occur between the ages of 3 and 8, but that a child’s developmental age may also need to be taken into account. When experiencing a night terror a child may:

  • Appear frightened
  • Scream
  • Cry
  • Thrash around
  • Appear confused
  • Not respond to the parent / carer or push them away

It’s important to be aware that although the child may seem agitated, they are likely to be unaware of this event and probably won’t have any memory of it in the morning. It’s more distressing for the person who witnesses it. Episodes usually last less than 15 minutes but in younger children, or in those with developmental delay, they may last quite a bit longer.

Some things that may make sleep terrors worse:

  • Changes in sleep patterns
  • Infections/ fever
  • Anxiety/ stress
  • Inadequate sleep
  • Medications that causes certain changes in sleep
  • Caffeine
  • Sleeping with a full bladder
  • Noise and light
  • Sleeping in a different environment
  • Sleep-disordered breathing
  • They may occur more frequently in certain conditions, for example Tourette Syndrome
  • Family history of night terrors or sleepwalking

Suggestions which can help you to manage sleep terrors:

  • Keep bed and wake times consistent
  •  Sleep deprivation can make it worse, so ensure that other sleep problems are managed where possible
  •  Ensure your child is in a safe environment
  •  Inform other caregivers e.g. if your child attends respite or sleepovers etc
  •  Avoid stimulants e.g. caffeine
  •  Avoid waking your child up during an episode as this can prolong a night terror or cause agitation
    If your child leaves the bed then gently guide them back to bed
  • Avoid comforting or other interference as this can also prolong the episode
  • Avoid discussing it with your child the next day as this may cause anxiety, and possibly more disturbed sleep
  • If the episodes happen at a predicated time each night, you could try scheduled waking. This is where you wake the child up 15 minutes before the episode occurs for a few nights (or more in some cases) and then let them go back to sleep and this can often break the cycle.

How did Helen and Rachel get on?

Since Rachel and her mum were also keen for Rachel to be more independent at night-time, Pattie also advised them on how to implement gradual withdrawal. This is a method which involves gradually increasing the distance between parent and child over a period of time. In this case, Helen used a camp bed and set this up in Rachel’s room. Every few days Helen moved this gradually a bit further away from Rachel’s bed until she was out of the room.

She also worked hard to ensure Rachel was calm at bedtime with a relaxing routine as well as keeping the wake times consistent each day (including weekends). You might find some tips in our Anxiety Guide useful.

After two months, Rachel’s sleep terrors had reduced considerably, and Helen got in touch to say how pleased she was that Rachel had managed to sleep over at her friend’s house for the night. Rachel also called Pattie first thing the following morning, as she had been so happy that she had managed to do it!

If you’d like some advice on managing sleep terrors, or other sleep issues, don’t hesitate to get in touch with us.

Arctic Ride Alaska!

Gordon with his brother Robbie

This summer Cerebra Ambassador Gordon Stuart will attempt his latest epic charity motorbike challenge. He will have just 12 days to take on the 5000 mile ride through Canada, Alaska, and the Arctic. 800 miles of this will be off-road when takes on the notoriously dangerous Dalton Highway, made famous in the documentary TV series ‘Ice Road Truckers’.

Gordon’s project, ‘The Arctic Rider’, is an on-going series of charity motorbike challenges. Gordon explains: “It started in 2011 as a charity ride to the Arctic Circle that didn’t really go to plan, and has become a near obsession with the Arctic, an obsession with riding a motorbike, and an obsession with helping charities close to my heart”.

In 2011 he crashed his motorbike in Sweden en route to the Arctic, raising £1,300 for Cerebra. In 2014, he rode 6,000 miles solo to Nordkapp in the Arctic Circle, raising over £5,000 for Cerebra. And in 2016, he completed the UK ‘Iron Butt challenge’, riding the length of the UK from Lands End to John O’Groats in 18 hours, raising over £1,800 for Tiny Lives Trust.

Causes close to his heart

This year’s challenge is the biggest yet! Gordon is attempting to raise £4000 for Cerebra and Newcastle based charity The Tiny Lives Trust. Gordon explains why these charities are very close to his heart:

“My little brother Robbie suffered severe brain damage from a near miss cot death when he was just 9 months old. Cerebra have supported my family ever since and I am proud to be a fundraiser and Ambassador for a charity that changes so many lives for the better. Both of my own children were born prematurely and spent time in SCBU. The Tiny Lives Trust helps to care for premature and sick newborn babies, their mothers, and families in SCBU by providing a range of facilities, staff, and equipment.”

Speaking ahead of his challenge Gordon said: “Only a few weeks ago I wasn’t even sure I was going to be able to do the trip this summer. My youngest, Hugo, has been in and out of hospital this year and was in only few weeks ago, which threw my trip into doubt. While I’m committed to the great charities I support, family always comes first. After some long conversations with my (long suffering biker-widow) wife Kirsty, we agreed that the right thing to do was to press ahead with my trip and raise even more money to help other children like Hugo and his big sister Islay. I must say The Arctic Rider project would be nothing without the support from Kirsty. This time she’ll be holding at fort at home for 3 weeks with a pre-schooler and a baby, while I’m fighting bears and mosquitoes in northern North America. Those who’ve been following since my early trips will remember I left a 6-month pregnant Kirsty while I sent off for Nordkapp in 2014 – what a lass!”

The Trip

Gordon will be riding 5,000 miles in 2 weeks to cross Canada and Alaska including the notorious Ice-road ‘The Dalton Highway’, deep inside the Arctic Circle – described as 800 miles of gravel, mud, mosquitoes, mountain ranges, and angry truckers!

To complete the ride he will to travel to Calgary, Canada to meet his specially modified off-road Adventure motorcycle (provided by Suzuki). He will then travel across Canada and Alaska to take on the ride and the Dalton highway. ‘The Dalton’ is a 414 mile stretch of mostly gravel road which was designed as a supply road to support the Trans-Alaskan Pipeline. The road is often cited as one of the world most dangerous roads due its remoteness, road quality, and demanding Arctic weather.

The trip will be a tough one. Phil Freeman, a veteran of 10+ rides up the Dalton and Alaskan native describes the ride: “Every year motorcyclists are killed on the Dalton Highway. There are relatively no places to stop along the way: no gas, no convenience stores, no McDonalds. There are stretches of up to 245 miles without gas. On a good day, you can ride it wide open. On a bad day, you can go home in a helicopter. You are literally riding through pristine wilderness. Welcome to the food chain.”

Gordon will be setting off from Newcastle on 26th June and you can follow his preparations and progress on his blog.

If you’d like to support Gordon please visit his Virgin Money Giving page.

Tiny hats for tiny babies

One of our dedicated fundraisers, Sam Elliott, has just knitted 39 baby hats for premature babies on the Neonatal Ward at Leeds General Infirmary.

Sam Elliott has worked in our fundraising department for just under a year. Having recently learned how to knit, she saw a post on Facebook asking for hats for premature babies. As we sponsor research at the University of Leeds into the prevention of premature birth, Sam decided to knit her hats for the hospital we work with.

Tracy Elliott, Head of Research & Information, and Imogen Morgan, Trustee, present the hats to the Neonatal ward

She created 39 hats in all different colours and sizes. It took her a couple of months with each hat taking about 2 hours to complete. Sam said:

“I love raising funds for Cerebra and through this project I was able to help our work in another way”.

Independence for Myles with our Oxygem

Our creative team of designers at our Innovation Centre and our Oxygem recently helped Myles to become more independent. Myles’ mum Vickie tells us more – and take a look at  the great video at the end!

We are a family of 4 – me, my husband Neil, Noah who is 6 and Myles who is 2 1/2.  Myles was born a seemingly healthy full term baby boy. But he struggled to thrive and was always catching viruses, we seemed to be at the doctors every week. He developed pneumonia at the age of 5 months and was hospitalised. We were sent home with medication but over the next few weeks he deteriorated and ended up being taken into intensive care where he required ventilation.

It was thought that Myles would be able to be weaned off oxygen as he had suspected broncholitis. After weeks in hospital trying to wean him it was obvious something else was going on with his lungs. For the rest of the year he was in and out of hospital having investigations and surgery. They decided to do a gastrostemy for additional nutrition as growth was a vital part of his care. After a lung biopsy and genetic screen he was diagnosed with Surfactant Protein Deficiency Type C. This is a condition which results in the lack of tension in the alveolar sack minimising the surface area for gas exchange.

Myles has been dependent on oxygen ever since meaning he always has to have an adult with him to carry the oxygen cylinder. Myles has done amazingly well hitting his milestones albeit a little delayed. He has started going to nursery just a few hours a week so I wanted to try and find something that would give him a little more independence.

I spoke to our care teams but there didn’t seem to be anything available through the NHS or privately. I even started to look at portable concentrators as these are much lighter but unfortunately these work on a pulse flow rate. A child’s breath intake is not strong enough to trigger the release of oxygen so these are only suitable for adults.

Through searching the internet I came across Cerebra and your Innovation Centre. The Oxygem looked perfect for Myles as he’s strong enough to push a trolley and it would enable him to have a level of independence. We were so overwhelmed he was accepted to receive one of the prototypes. He took to it straight away and now enjoys walking round the park with it and walking on the school run.

Myles’ condition means that as he grows he will hopefully be able to have stints off the oxygen. But it’s during levels of activity that he really needs more. The Oxygem enables him to move around with the cylinder when he needs it most. He is due to start school September 2019 and I think the Oxygem will really allow him to integrate with his peers. The fact that the handles can be changed for longer ones as he grows is brilliant.

Watch Myles in action

Can our Innovation Centre help your family? Don’t hesitate to get in touch for a chat.

Preventing neonatal brain injury and childhood disability

The main objective of the Cerebra Perinatal Research Centre at the University of Leeds is to make a difference in the lives of expectant mothers and their children. In this article we take a look at why this research is important, the progress being made and the longer term impact of our research.

Cerebra Perinatal Research Centre: preventing neonatal brain injury and childhood disability

While most women can enjoy a healthy and uncomplicated pregnancy, there are three major adverse outcomes that may unexpectedly occur:

  • preterm birth (babies born more than 3 weeks early),
  • growth restriction (baby has a lower birth weight than expected), and
  • pre-eclampsia (high blood pressure in pregnancy).

Worldwide, and in the UK, these adverse outcomes affect one in five pregnancies. Alone, or in combination, they may have serious consequences for the mother and/or her baby.

Importantly, they are the leading causes of neonatal brain injury and later childhood disability (both cognitive and motor, ranging from poor academic achievement through to the spectrum of cerebral palsy). For many of these babies there is a need for additional neonatal support and care, especially for those born preterm.

Ideally, we would be able to predict which mothers are at risk and put in place preventative strategies. However, identifying at-risk mothers is difficult as the reasons for these adverse outcomes are complex and poorly understood.

Why our research is important

We are a research group focused on understanding the causes of these pregnancy complications. Since 2007 we have been engaged in identifying the pre-symptomatic detection of these conditions and promoting preventative strategies. Thus reducing the incidence and burden of childhood brain injury.

Our research has informed clinical practice, inspired multi-professional teaching, and led to a reduction in one of the key adverse outcomes, preterm birth. Over the period of Cerebra’s funding of the Centre, this work has led to a fall in preterm birth rates, with almost 350 fewer babies each year being born too soon.

The development of the SCOPE cohort supported by our first Cerebra programme grant confirmed the usefulness of a biomarker called placental growth factor. In combination with other clinical risk factors this enhanced prediction, improved outcomes, and reduced the need for unnecessary preventive treatment. The use of this biomarker has since been recommended for use in clinical practice (nice.org.uk/guidance/dg23).

Our research has always concentrated on ensuring effective clinical practice. Without successful implementation of research findings there will be no reduction in the numbers of babies born at risk of brain injury and later disability.

The research need is greater for those women whose risk status only becomes evident after an adverse outcome and for some conditions where no suitable preventive treatment currently exists. It is for these women and their babies that we need to develop new and innovative strategies that can lead to effective preventive interventions.

Some key indicators of progress are:

  • We have recruited more than 3,000 mothers for our prospective biobank TWS (Thousand Women Study)
  • We have published 26 research papers in peer-reviewed international journals and regularly present at national and international conferences
  • We have established partnerships and key collaborations with national and international groups, universities and organisations such as: Kings College London, the University of Manchester, the Royal College of Obstetricians & Gynaecologists, Baby Lifeline, Action on Pre-Eclampsia, Harvard University, SCOPE (the international pregnancy biobank consortium), and InterPregGen (genetics of pre-eclampsia) to name a few
  • We contributed to the NICE Diagnostics Committee’s report on the use of PlGF (placental growth factor) in the diagnosis and management of pre-eclampsia (nice.org.uk/guidance/dg23), and the upcoming recommendations on near patient diagnosis of preterm labour (nice.org.uk/guidance/indevelopment/gid-dg10017)
  • Our Family Integrated Care neonatal program received national recognition for their work, featuring on the BBC’s Victoria Derbyshire program
  • Our Research Midwifery team were an integral part of the highest-recruiting Reproductive Health & Childbirth specialty group in the NIHR-Clinical Research Network for 2016/17

Longer term impact of our research

The main objective of the Cerebra Perinatal Research Centre is to make a difference in the lives of expectant mothers and their children. Our research focuses on understanding pregnancy complications and developing diagnostic/preventive tools. One of our key objectives throughout the programme was the assembly of a comprehensive demographic, clinical and tissue biobank, the Thousand Women Study. This information will be used to characterise healthy pregnancy and help devise predictive and preventative strategies for adverse outcomes. With Cerebra’s funding we have recruited over three thousand women in mid-pregnancy that will enable us to carry out both discovery and validation studies into potential biomarkers and establish new predictive tests, but also evaluate the reliability of those proposed elsewhere.

We are also using innovative imaging technology that allows large areas of the placenta to be surveyed and visualised in 3D. By using this digital platform we will be able to perform a comprehensive analysis of healthy and diseased placentas and compare for structural or morphological differences. We hope to further our understanding of placental function in pregnancy complications and identify markers of susceptibility to disease, that could be used a prognostic tools.

We are also currently leading a clinical trial, the Minidex study, which will provide much needed data on the safety and efficacy of very low doses of steroids in preterm/low birth weight infants who are at particular risk of developing lung and brain injury.

Our research is important for families, and can make a huge difference to the lives of expectant mothers and in their children by reducing/eliminating the incidence and impact of brain injury.

You can find out more about our research programme and watch a short video here.

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.