Tag Archives: information

Accessing Public Services in Scotland: A problem-solving toolkit

Scots law provides powerful rights to education and support from other services, but this alone is insufficient. The law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. This guide aims to help unpick these problems and to develop effective strategies for resolving them.

You can download the toolkit below.

Download Accessing Public Services in Scotland: A problem-solving toolkit PDF

Published 2017. This edition 2017. Review date 2020.


Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Research and Information Request Service

In a survey we carried out in 2016 (with 1937 respondents), less than 41% of parents receive written information when they get a diagnosis for their child. In addition many families felt that the lack of reliable, accessible and impartial information hampered their ability to make informed choices for their family.

So as a parent or carer of a child with a brain condition you may be keen to look for more information about your child’s condition, therapies, treatments or other services on the internet. While the internet provides a huge amount of information, much of which is freely available and easy to access, not all websites give reliable information.

Our aim is to equip you with the knowledge, skills and confidence you need to do your own research, appraise the information you find and make your own decisions about what’s right for your family.

Parent Guide

As a first step our guide on Finding and appraising information and evidence on the internet makes some suggestions to help you search efficiently on the internet, and to appraise whether the websites you find present reliable and unbiased information.

Parent Research Requests

If you need further help, we will be happy to help. One of our Research Officers can help you frame your question in a way that will provide the evidence you are looking for. We can give advice on search strategies and key websites to explore as well as signposting you to sources of reliable, impartial information. Please get in touch with georgiam@cerebra.org.uk for more information on this service.

Your requests help others

Whatever information you are looking for, the chances are that it will also be useful to other families.  We use a systematic process for dealing with your research requests that allows us to identify and prioritise the issues that are concerning you. Where reliable evidence based information already exists we produce brief fact sheets signposting to it. Where such information is lacking, or does not meet your needs, we commission and produce evidence based guides for parents.

We have a range of Guides for Parents and factsheets that we have developed because of your questions. All of our guides are covered by The Information Standard, a recognised quality mark, which indicates that our information is accurate, accessible, impartial, balanced, based on evidence and well-written. Our guides have received excellent feedback with some recently being highly commended by the British Medical Association.

If you would like more information about our new Research and Information Request Service, please get in touch with georgiam@cerebra.org.uk

Please note that this service is no substitute for medical opinion or advice. We aim to provide information that will give you the information you need to help you make informed decisions about the care of your child in consultation with the medical professionals supporting your child.

Education in England: Statements of Special Educational Needs: A Guide for Parents

Statements SEN EnglandA new system for children with special educational needs (SEN) was introduced in England from September 2014. From that date statements of special educational needs (SEN) were replaced in England (but not Wales) with a new document called an Education, Health and Care plan (EHCP). This means that SEN statements are no longer issued and those children who have a SEN statement are gradually being transferred over to an EHCP. This process is not due to finish until April 2018 which means we are in a transition period where the old and new systems are running alongside each other.

Please note this guide is only relevant to those children who still have a SEN statement and live in England. If you believe that your child has SEN or is being assessed for an EHCP or already has an EHCP please see Cerebra’s Education Health and Care (EHC) Plans (Education in England: A Guide for Parents). If you live in Wales please see Cerebra’s Education in Wales: A Guide for Parents.

Download 'Statements of Special Educational Needs (Education in England: A Guide for Parents)' PDF

First published 2016. This edition 2016. Review date 2018.


Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Finding and Assessing Sources of Legal Help: A Guide for Parents

Parents of disabled children might well need to seek legal advice at some stage in their lives for a whole host of reasons. The child may have been injured, may not be getting the educational support to which they are entitled, or they may even need representation at a police station. There will also likely be a need to consider making a will and other financial arrangements for their child.

Identifying and approaching a solicitor for legal help can be one of the more daunting prospects for families and carers of children with a disability. The choice of your solicitor is critically important. This guide is intended to make that approach as straightforward as possible.

Download Finding and Assessing Sources of Legal Help

First published 2013. This edition 2017. Review date 2019.


Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

 

Education in Wales: A Guide for Parents

Educationin WalesThis guide has been prepared for parents of children with special educational needs (SEN) and/or disabled children living in Wales. It only applies to Wales and we have written separate guidance for England.

Download 'Education in Wales: A Guide for Parents' PDF

 

 

First published 2016. This edition 2016. Review date 2019.


Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Emotional Support Website

IMG_6477Joanna Griffin is a Chartered Counselling Psychologist who also has her own child with a disability. She runs a website, Affinity Hub which aims to provide emotional support to parents and carers of children with special needs.

“Having a disabled child often means having to deal with additional associated challenges in practical, physical and emotional terms. My own journey into the world of special needs started when my eldest son was born.  Unfortunately due to mis-management, poor communication and a blocked theatre when he was delivered he was in a very poor condition and it took 23 minutes to resuscitate him. We were told that he may not smile, walk or talk.

Nine years on he does smile, walk and talk but has many difficulties and different diagnoses caused by the deprivation of oxygen at the time of birth.

Coming to terms with his diagnoses and difficulties has been a long, often painful, road.  New challenges have presented themselves along the way and I’ve been struck by what a difference it can make dealing with an understanding and empathic professional, or speaking to a parent who has experienced similar difficulties, particularly to my emotional wellbeing.

From my own personal experience I felt that parent-carers sometimes needed specific emotional support in order to help process their experiences and feelings. This was supported by my previous professional experience, as a Home and School Visitor at Hemihelp, as well as a pilot research study I undertook about other parents’ experiences and emotions.  The survey found that 100% of parents reported feeling stressed or anxious about their disabled child.  This correlates well with Cerebra’s study into stress in families which led to the excellent booklet ‘Managing Stress for Carers and Families’. In my study parents also reported feeling anger (66%) about their child’s disability and 60% felt depressed or down.  There were also feelings of helplessness (52%), guilt (50%) and denial (22%).

Exactly half of respondents reported a negative impact of having a disabled child on their own life, although many indicated that this could change depending on the time and day and they were only given the option to respond as either positive or negative.  Over 70% felt there had been a negative impact on siblings and nearly 80% on their relationship with their partner.

P1040210On a positive note, many parents reported feelings of pride (74%) and an inner strength or resilience (60%) that helped them get through their experiences.  Half of the respondents also reported having a ‘fighting spirit’ (52%) to advocate on behalf of their child.

Psychologists talk about post-traumatic growth and for 80% of respondents it had helped them put life into perspective, grow as a person (70%) and become more tolerant (65%). Many reported increased confidence in their ability to support their child, as they become the expert and, at times, counter the views of certain professionals.

I believe that if parents of a disabled child seek counselling they require someone with specific experience and knowledge to be aware of the many different factors that can have an affect on a parent-carer.  This may include: attending numerous appointments, fighting for services and limited resources, needing to ‘grieve’ for the healthy or idealised child one expected to have, lack of sleep, financial concerns, pressures on relationships, worries for the future, the trauma of seeing your child nearly die or undergo invasive procedures and concern for the impact on siblings. These are all difficult things to experience, process and accept alongside the day-to-day looking after a child and remembering that your disabled child is just a child who needs to play, be loved and hugged and learn about the world as any other child does.

Unfortunately trying to find organisations or professionals that can offer emotional support and understand the complex issues connected with having a disabled child, can sometimes be difficult.

In response I have developed a website of emotional support for parents of children with special needs.  The website, Affinity Hub, aims to provide a virtual home for parents to realise that they are not alone. There are many other families also going through similar experiences and feeling similar complex emotions. Hopefully by reading about this it can reduce isolation.

The Professional Support section lists organisations that provide emotional support as well as private counsellors, psychotherapists and psychologists that have experience of supporting this specific client group. I am in the process of identifying practitioners across the UK.

The website not only lists many common emotions parents might experience, it also includes quotes from other parents about their experiences and what advice they would give to other parents. There is also a growing list of books and reference material that parents have found helpful.

Although much of this information is available online if a parent were to search for it I hope that by bringing it all under one umbrella it will help parents and reduce the time (very precious to us parents) they have to spend looking.

Please share your views by completing the survey on your experiences as a parent of child with special needs on the home page at www.affinityhub.uk.”

What’s The Evidence? reports

The Peninsula Cerebra Research Unit (PenCRU), ‘What’s the Evidence?’ reports are an an ongoing series of short reports that seek to summarise what is known about the effectiveness of a particular treatment or therapy. These reports are a synthesis of existing research and are not new studies that have been carried out. They are written in responses to queries from families about specific therapies and treatments. These evidence summaries are intended to help families make informed decisions about treatments and therapies for their children’s health care. The team produce reports about both NHS and complementary or alternative therapies.

To find out more click here.

Managing Challenging Behaviour Factsheet

Challenging behaviourSome behaviours are a challenge to professionals, teachers, carers and parents. This factsheet gives information on how to manage challenging behaviour by considering five key points:

What is challenging behaviour?
Why does challenging behaviour happen?
Understanding challenging behaviour
Where do I find professional help?
What further information is available?

Download Challenging Behaviour Factsheet PDF

Published 2015. This edition 2016. Review date 2018


 

Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Social Care in England: A Guide for Parents

This guide has been prepared for parents of disabled children in England who want to know how to get help for their child’s social care needs. It principally deals with the responsibilities of the local authorities to provide social care for disabled children, as well as support for the parents/carers of those children.

Download Social Care in England: A Guide for Parents PDF

First published 2012. This edition 2015. Review date 2018.


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Returning to school: A teacher’s guide for pupils with brain tumours, during and after treatment

Return to school coverThis publication aims to guide teachers and schools faced with the task of supporting a pupil with a brain or spinal tumour who may be absent for some time, or who may have sporadic attendance with a very serious illness and potentially devastating long term effects.

It explains what the pupil may be going through both medically and psychologically. It offers practical strategies for ensuring supportive re-integration back to school. Suggestions are given for how teachers, assistants and SENCOs can provide sustained and targeted support for pupils who face extended treatments, devastating long term side effects or an uncertain future.

Download 'Returning to school: A teacher's guide for pupils with a brain tumour, during and after treatment' PDF

BMA Patient information awards_highly commended

Highly Commended in  Special Award-NHS Trusts in the BMA Patient Information Awards 2016.

 

Factsheet: Recommended teaching strategies for pupils with a brain tumour

Marsden factsheet cover

This factsheet gives information on how a school can assist a pupil with a brain tumour. In particular it pinpoints a number of different strategies to use as memory and cognition in some, but not all, pupils with a brain tumour can be seriously affected by their treatment.

Download 'Factsheet: Recommended teaching strategies for pupils with a brain tumour' PDF

 

Infographic: What to do when a child is diagnosed with a brain tumour

Marsden diagnosis infographicA child with a brain tumour will be encouraged to return to school as soon as possible after initial diagnosis and treatment, even if only for a few hours or half days per week. Here are some tips for the time when the pupil is away from school having treatment and following their return to school.

Download 'What to do when a child is diagnosed with a brain tumour' infographic PDF

Infographic: What to do if a pupil with a brain tumour become palliative and may die

Marsden palliative infographicThis infographic provides information on how the school community can create a climate where the pupil’s independence, hope and dignity are respected, and consideration given to how siblings, other pupils and members of staff may also be feeling.

What to do if a pupil with a brain tumouor becomes palliative and may die' infographic PDF

All information on this page published 2015. This edition 2015. Review date 2018.


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Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.