Category Archives: Information and Advice

Cookies Policy

The Cerebra website uses a small number cookies to assist us in providing the best service we can to our visitors. Cookies are small files of data that are stored for varying lengths of time on your device. They cannot be used to identify you personally. By using our website you are agreeing to their use but you can change the settings on your web browser to prevent this. Viewing of the Cerebra site will still be possible but there may be a reduction in functionality. More information on cookies and how to delete and disable them can be found at www.aboutcookies.org.

First party cookies

First party cookies are our own cookies that are controlled by us and used to provide information or functionality specific to the services we provide. The Cerebra site currently does not use any first party cookies.

Third party cookies

These are cookies found in other companies’ internet tools which we are using to enhance our site, for example Google, Facebook and Twitter have their own cookies, which are controlled by them.

Below is a list of the cookies currently in use on the Cerebra website. Further details can be obtained from the providers of those services.

Provider Name Purpose More info
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These cookies are used to collect information about how visitors use our site. We use the information to compile reports and to help us improve the site. The cookies collect information in an anonymous form, including the number of visitors to the site, where visitors have come to the site from and the pages they visited. Google Privacy policy
Our full privacy policy can be viewed here.

Privacy Policy

Who we are

We’re the charity that helps families who have a child with a brain condition to discover a better life together.
This policy and our Cookies Policy sets out how Cerebra – For Brain Injured Children and Young People, uses and protects your personal information, including data from your use of our website.

Cerebra is the Data Controller for personal data about families we help, professionals, supporters, event attendees, grant applicants, volunteers and newsletter subscribers. For the purpose of this document we will use the group term ‘supporters’ to describe any one of these groups.  Our ICO registration number is Z6201581.

We do not trade personal data for commercial purposes and will only disclose it if required by law, if it is necessary to arrange your event attendance, or if it is with your consent. Cerebra uses providers based in the European Economic Area to process supporter data.

Cerebra is registered with the Information Commissioner’s Office under number Z6201581 is a registered charity under number 1089812 and a registered company limited by guarantee under number 4336208 (England and Wales).

You can change how we contact you at any time, simply by contacting us by email at contactcare@cerebra.org.uk or calling us on 01267 244200.

As part of our commitment to you, we have appointed a Data Protection Officer, whose name is Ralph Nicholls. You can contact Ralph, either by writing to:

The Data Protection Officer,
Cerebra,
2nd Floor Lyric Building,
King Street
SA31 1BD

or emailing: dpo@cerebra.org.uk or using our contact form.

This policy was updated to show that we are adhering to the new General Data Protection Regulation (GDPR), which came into force in May 2018.

Our promise to you

Cerebra promises to respect and look after all personal data you share with us or that we get from other organisations.

We will always keep it safe.

We aim to be clear when we collect your data about what we all use it for, and not to do anything you wouldn’t reasonably expect.

We will never sell your personal data to other organisations, and we will only ever share it in appropriate, legal or exceptional circumstances.

What personal data we collect and why we collect it

The type and quantity of data we collect and use depends on why you have provided it.

We will only collect, use and otherwise handle your personal data:

  • where you have consented to this for specified, explicit and legitimate purposes
  • where this is necessary to fulfil legal obligations that apply to us
  • where it is necessary for our legitimate interests relating to running our daily operations, as long as, in each case, these interests are in line with applicable law and your legal rights and freedoms.

Research

Much of the work we do involves carrying out research. If you agree to take part, we will record responses to questions that you give us, and your personal details.

This data will be used to fulfil our research objectives, and may be shared for relevant projects. Your data will remain anonymous unless you consent to it being disclosed.

The data we collect will be kept for five years.

Services

Cerebra offer a wide range of information and advice services to families, and professionals.

We will collect your contact details and preferences, and any other data that is relevant to delivering the service to you.

This information will only be used for the purposes of the service and not shared with the rest of Cerebra unless you give us permission to do so.

We will keep the data for up to six years, in line with contracts and government regulations.

Children’s data

Although children under 16 can fundraise with the consent and support of a guardian, we do not record their contact information. Instead, their parent or guardian’s details are recorded (with their contact preferences). Individuals over 16 can be recorded but still require a guardian as reference (for school contacts this can be a teacher).

For our services, the service is always provided to the family or parent. Data is supplied to us where we have a legal basis to collect and retain that data as per the contracts, or included in the case notes provided, for example by paediatricians or in independent support where there is a young person involved. This information is not shared with anyone not connected to providing the service.

We will keep the data for up to six years, in line with contracts and government regulations

Helpline

We run a support and information helpline.

We record only the data needed to help your enquiry. This data is not shared in any way and will not be used to contact you about other services or offers from Cerebra unless you give us permission to do so.

We will keep this data for one whole financial year after you contact us.

Supporters

If you support us, for example by signing up to an event, donating, signing up to Gift Aid, or signing up to a campaign, we will usually collect your name, contact details, and whether you would like to be contacted, and how we would do so. If appropriate, we may also ask to collect your date of birth, financial details, Gift Aid eligibility, reasons for support, information relating to health and disability, and responses to our campaigns. We will also ask if we can share your story for publicity purposes.

We collect this data so we can keep you up to date with information and products you have requested, or may be interested in, and to ask for more support, in the way that you have chosen; to run our events; and to fulfil our legal responsibilities for financial and Gift Aid reporting.

We will keep your data only for as long as necessary. If you have kindly donated to us, we are required to keep this data for seven years. If you have not donated to us, we will only keep your data for three years.

Volunteers

If you volunteer with us, or enquire about our volunteering opportunities, we will usually collect your name, contact details, emergency contact details, bank details, contact preferences, ethnicity, gender, availability to volunteer, disability (including physical and mental conditions) and criminal convictions.

We collect this data so that we can contact you about volunteering opportunities that come up; so that we ensure the safety of our volunteers, staff and customers; can pay expenses; carry out our awards programme; and to help us anonymously measure our inclusion and accessibility across our volunteering programmes.

We will keep this data for two years after you stop volunteering for us.

Gift in Wills

If you plan to leave a gift in your Will to Cerebra we will collect your contact details and contact preferences. We will also do this if you tell us you are you are thinking about leaving a gift to the charity or would like more information on how to do so. We will use this data to keep in touch and send you other information and products that you are interested in. This data will be kept on file long-term, as hopefully it will be many years before your gift is realised. If you change your mind then we will only keep this data for three years

In order to administer bequests, solicitors, executors will provide us with details of the deceased, the corresponding executors, solicitors and where necessary other beneficiaries. This data will be kept by us and shared with our legacy administrators for the purposes of administering our legacy income. On occasion we may share this data with other parties such as co-beneficiaries, third party experts and any other person(s) involved with the estate for the purposes of administering legacies only. The data will be kept on file indefinitely.

Storytellers

Some of our families and supporters kindly tell us stories about their experiences to help us in our publicity and fundraising campaigns. If you are happy to do this we will ask you to complete a publicity consent form.

We will record the details of the story, including photographs, and contact details to enable us to get updated approval to use the story should this be deemed necessary.

We will keep this data for five years after you give it to us.

Photography

Our families, supporters and volunteers kindly let us use photography and images of them to help our campaigns and activity come to life.

We keep these images stored in a secure location and will only use them with the subject’s permission.

We keep these images for five years after we have been given them, unless you ask otherwise.

E-newsletter (News Flash)

We use third-party providers, Mailpoet and ElasticEmail, to deliver our monthly e-newsletters. We collect statistics around email opening and clicks using industry standard technologies including clear gifs to help us monitor and improve our e-newsletter. For more information, please see  Mailpoet privacy notice and ElasticEmail privacy notice.

Complaints

Should you wish to register a complaint we will collect your name, contact details and details about the complaint to enable us to respond, monitor and improve our organisation.

This data will be shared with any parts of Cerebra or any third parties who are involved in resolving the complaint, for example, agencies that we have partnered with.

We will hold this data for six years.

Website

When someone visits cerebra.org.uk we use a third-party service, Google Analytics, to collect standard internet log information and details of visitor behaviour patterns. We do this to find out information, such as the number of visitors to the various parts of the site.

If we want to collect personally identifiable information through our website, we will be up front about this. We will make it clear when we collect personal information and will explain what we intend to do with it. We will collect any questions, queries and feedback you leave. This will include your email address if you send us an email, your IP address, and which web browser (and version) you use. Information on how people use the site, through cookies and page tagging, helps us improve our website and our services. Find out more about our link to Cookies Policy.

We may also pass on your personal information to online advertising tools, including Facebook Custom audiences, Google AdWords Match and Google Analytics to carry out ‘remarketing activities’. These third-party vendors may use cookies to serve these ads based on your previous visits to our website.

We might also obtain your personal data through your use of social media such as Facebook, Instagram, Twitter or LinkedIn, depending on your settings or the privacy policies of these social media and messaging services. To change your settings on these services, please refer to their privacy notices, which will tell you how to do this.

Suppression List

Should you not wish Cerebra to contact you in the future, we will hold your contact details on file. This will enable us to ensure that we comply with your wishes.

We will hold this data indefinitely. Should you wish to engage with Cerebra again then please get in touch with us at contactcare@cerebra.org.uk.

Phone Recordings

Cerebra records some calls to help train our staff and for legal purposes.

The records will be deleted after two years.

Who we share your data with

Unless we are required to share your data for legal or regulatory reasons, to help with a complaint, to administer a Gift in Will, provide requested services or to keep your record up to date, we will never share your data with other organisations without your permission.

We do use third-party organisations to help us collect donations such as JustGiving, and to help us fulfil our marketing. Where we use external companies to collect or process data on our behalf, we carry out comprehensive checks on these companies, and put in place contracts to control how they manage the data they may collect or have access to.

Cerebra uses providers based in the European Economic Area to process supporter data.

How we protect your data

At Cerebra we ensure that the most appropriate technical controls are in place to keep your data safely. Access to your data is regularly reviewed and only accessible to the relevant trained staff, volunteers and contractors.

Where we use external companies to collect or process data on our behalf, we carry out comprehensive checks, and put in place contracts to control how they manage the data they may collect or have access to.

Your data will be hosted on servers located in the UK, which will not be transferred out of the European Union, or in the case of our ElasticEmail, the data will be stored in Canada and or the US.

What third party data, automated decision making and/or profiling we do

To help us ensure that we only hold accurate and up to date data, we regularly use third-party data sources to clean our data. These data sources include UKDataHouse and the Post Office.

We carefully manage the communications we send you to ensure that we are contacting you in the most appropriate way and that we are not sending you unwanted communications. To do this, we may combine the information that we collect about you and analyse what we know about your interests, preferences and level of potential engagement or donation. We may use data that we have not directly collected from you, such as information from Companies House, Media, and Dun and Bradstreet. We may also use statistical analysis on this data to understand the likelihood that you will be interested in or responsive to a campaign or message.

You can opt out of your data being combined and analysed for marketing purposes by contacting us at contactcare@cerebra.org.uk. However, this may mean that you stop receiving marketing communications from us more generally

What rights you have over your data

We will only collect the data that we need to carry out the purposes you have contacted us for, or given us permission to use it for.

To enable us to carry out the purposes you have contacted us for, there will be occasions when we will make some data collection mandatory i.e. your name and address to claim gift aid, or your email address to access our services. If you don’t provide this data, we cannot carry out the purposes you have contacted us for.

We will always tell you why these fields are mandatory.

As an individual whose personal data is processed by Cerebra you have the following rights:

To exercise any of these rights, please use the contact form to get in touch.

If you are not happy with the way we have handled your data, and are unable to resolve the issue with us personally, you can complain to the ICO.

Parents, researchers and charities join forces to create new resource for parents of children with learning disabilities.

The University of Warwick, Mencap, Cerebra, and the Challenging Behaviour Foundation have teamed up with parents of children with learning disabilities to produce a new Parent’s Guide on improving the well-being of young children with learning disabilities. The guide is being launched today (25th May) in Belfast and you can download the the booklet here.

Research has shown that young people with learning disabilities face more barriers to achieving well-being than children without a learning disability, but also that there are practical steps and strategies which parents can take to change this.

Combining the practical wisdom of parents with insight from the University of Warwick’s twenty years of research into the wellbeing of families of children with a learning disability, the new guide presents hints and tips, backed up by research, for parents to use in their family lives to promote the well-being of their children and to develop positive family relationships.

The Parent’s Guide has been created to help parents support the well-being of children from 0 – 5.   It offers suggestions on ways to build and support warm, positive family relationships, and also includes a chapter on activities parents and siblings can do to support the development of a child with learning disabilities.

Each chapter includes advice from parents, suggested activities, and space for personal notes and reflection.

Parents invited to give feedback on the guide befor its launch said:

  • “The tone of the booklet is really reassuring, and easy to understand. It makes a nice change from the booklets we usually read that are full of jargon.”
  • “The best bit of the booklet for me is hearing about other people’s experiences and coping mechanisms. It makes me realise that we aren’t alone. I just wish we had had something like this when our son was born.”
  • “Every chapter is so relatable, and it’s so useful to read about all of the activities.”
  • “I want to complete the reflection activity and review this to see if I did set some time aside for myself. I think that putting it somewhere I can see it, like on the fridge, will remind me to do it.”
  • “I think that this booklet is amazing information for parents to know.”

The guide has been written by Dr Samantha Flynn, Dr Vaso Totsika and Professor Richard Hastings of the University of Warwick’s Centre for Educational Development, Appraisal and Research (CEDAR), in collaboration with family carers of children with learning disabilities, Margaret Kelly and Joanne Sweeney of Mencap Northern Ireland, Tracy Elliott from Cerebra and Viv Cooper OBE and Jacqui Shurlock from The Challenging Behaviour Foundation.

The guide is supported by a policy briefing which you can download here:

Policy briefing

Dr Totsika said:

“We wanted to share what CEDAR has found out about the best ways parents can  support the well-being of children with learning disabilities in a format that was easy to understand and also easy for parents to put into practice.

“We are very grateful to the parents who worked with us on the Guide to put our research into context, and share their own experiences of supporting a child with learning disabilities through examples from their own lives.”

Margaret Kelly, Director of Mencap NI said:

“We are delighted to have worked alongside the University of Warwick, parents and various organisations to produce this wonderful guide to help support parents of young children with a learning disability.

“There are currently 5,000 children with a learning disability under the age of seven in Northern Ireland and we believe every young child with a learning disability should have access to early intervention services that support their development from birth.

“At Mencap, we are committed to ensuring children with a learning disability and their families have access to effective early intervention services and approaches and we believe this book will be of support to so many parents of children with a learning disability.”

Tracy Elliott, Head of Research and Information at Cerebra, said:

“Cerebra is the charity that works with families who include children with brain conditions.  By listening to families we know that one of their key concerns is for their child’s well-being, but they often question what well-being means for their child and how can they promote it.

“Using research evidence, this booklet will answer key questions families have and give them ideas of what they can do to enhance their child’s and family’s well-being.”

Jacqui Shurlock, Children and Young people’s lead at the Challenging Behaviour Foundation said:

“The Challenging Behaviour Foundation supports families of children and adults with severe learning disabilities whose behaviours are described as challenging.

“Families tell us that it is really difficult to get good information or support when children are small and that sometimes professionals dismiss their questions or concerns about how to manage day to day life.  Families want the right information at the right time, presented in the right way.  This booklet is a real step in the right direction.  We hope families will find it useful and we very much hope to see other researchers following this example.”

Development of this booklet was supported by an award from the ESRC Impact Acceleration Award of the University of Warwick (ES/M500434/1).

The research that primarily fed into this booklet has been funded by a grant from the Baily Thomas Charitable Fund (TRUST/VC/AC/SG/4016-6851). Some of the previous research that was included in the booklet had been supported by the Economic and Social Research Council.

Mencap, Cerebra, and the Challenging Behaviour Foundation have provided support for a number of the studies included in this booklet, both financial and collaborative.

 

 

Borrow ebooks and audiobooks with BorrowBox

woman reading an ebook and drinking coffee

You can now borrow ebooks from the new Cerebra BorrowBox Library. We have a selection of titles that you can borrow for free for 28 days. There are also several children’s audiobooks, if your child prefers to listen to stories rather than to read books.

The ebooks can be borrowed to read on Apple or Android devices, Kindle Fire tablets using the BorrowBox app or from your computer on their website.

How to borrow ebooks and audiobooks

If you are already a Cerebra library member and would like to use our BorrowBox library, please email Jan the Librarian at janetp@cerebra.org.uk to get your unique log in number. If you are not already a library member, fill in the membership form to join now and if you tell us you’d like to borrow ebooks or audiobooks Jan will give you your log in number in your membership email.

BorrowBox website

Visit our BorrowBox library by clicking the image below. You can browse the books we have available and even read samples. Then you just need to sign in to borrow a book or audiobook.

Borrow ebooks and audiobooks from our BorrowBox library

BorrowBox apps

Download the BorrowBox app to read ebooks or listen to audiobooks on your phone or tablet. Search for ‘BorrowBox’ in the Apple AppStore, Google Play or Amazon AppStore to download the app. Or click one of the links below.

 

Once you have installed the app on your device you need to put ‘Cerebra’ in the ‘Library’ field and then login with your membership number and PIN.

Library catalogues

Download our library lists and discover the books and toys you can borrow from our free postal lending library.

library book list cover

Book list

These are our books for adults on all sorts of topics relating to brain conditions and additional needs.

Download PDF


children's book list cover

Children’s book list

These are our books to be read with children or by older children. There is a mixture of fiction and non-fiction on all sorts of different topics including growing up and behaviour.

Download PDF


sensory toy list cover

Sensory toy list

Find out about all of our sensory toys and kits like the popular Sensory in a Suitcase.

Download PDF


If you’d prefer a hard copy of any of our library lists give us a call on 0800 328 1159 or email janetp@cerebra.org.uk and we’ll send you one in the post.

Join our library

Sign up to borrow books or sensory equipment from our free postal lending library.

About you

About the child you care for or support

About joining the library

Cerebra is committed to protecting and respecting your privacy. We will use the information you have provided to process your request to become a member of our library.

We will store your details electronically and keep it secure. We will not sell or share it with third parties. We will keep your personal data for no longer than is necessary for the purposes described above.

Please tick the box below to give us permission to use your personal information in this way. You can withdraw your permission at any time by contacting janetp@cerebra.org.uk. For more information about your rights under data protection legislation, including your right to make a complaint to the Information Commissioner’s Office, please visit ico.org.uk/for-the-public

If you have any queries about how we handle your personal information, please contact us at enquiries@cerebra.org.uk

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.

BorrowBox is coming soon!

We’re delighted to announce that BorrowBox is coming soon to our library. With BorrowBox you’ll be able to borrow e-books and e-audiobooks from Cerebra 24 hours a day, 7 days a week. .

Recognised as the No1 library download platform in the world, BorrowBox is the brainchild of Bolinda Digital. Unique because it will enable members of our library to download and borrow eBooks and e-Audiobooks via digital  loans. BorrowBox is the only app of its kind in the world with an inbuilt eBook reader and eAudiobook player.

On your phone, on your iPad, on your home computer, BorrowBox means that the doors to our library will never close – you can access books around the clock. BorrowBox can be used online and with Apple iOS and Google Android devices. You’ll be able to download ebooks directly from the the Cerebra library or from the BorrowBox app.

We are so pleased to be able to offer a new service as part of our library. With BorrowBox we are able to offer e-books as well as books. These are going to appeal to a different group of people who prefer reading books on their tablet, PC or kindle. Anyone who is a member of Cerebra can join our BorrowBox library, you don’t have to be a member of the postal library. We are pleased to be giving parents more ways of getting information about neurological conditions. As well as e-books for parents, we are also going to have a selection of e-audio books for children. This is really exciting as we haven’t been able to offer books that children can listen to before. Jan Pugh – Cerebra Librarian

Keep an eye open for more information about how you will be able to use this wonderful resource, completely free of charge.