Elijah's Hope Newsletter

ELiJAH’SH PE

Support today, hope for the future...

CIC

ELIJAH’S NEWS

We are delighted to have officially launched Elijah’s Hope, a community interest company (CIC), which will help and support families facing acute challenges due to child illness.Established in honour of eight-year-old Elijah Hodges, who has a rare genetic disorder, our organisation will help children, young people and their families in a number of different ways.

Our regular newsletters will include the full details of our upcoming workshops and luncheon clubs and will outline where and how you can get supported.

In addition, each issue will be packed full of useful information to help you get access to the correct support therapy respite and funding and mobility aids, to which you are entitled.

In this first issue you will discover why Elijah’s Hope was established and learn the importance of postural care, which is highlighted through our Postural Care Positive Deviance Initiative launching in May.

Overall, we want to help take the stress out of your challenging situation and help make life easier.

Welcome to Elijah’s Hope

Kaddy with Ali Vowles and Doctor Phil Hammond at Radio Bristol in February this year.

Life can be a rollercoaster and can easily get out of control when facing life changing situations, but through Elijah’s Hope we can offer the help needed to steer you back on track.

Founder, Kaddy Thomas.

“

May 2014 - First Edition

Elijah’s Hope, Founder Kaddy Thomas, explains how her son became her inspiration to help others. Here is her touching story.Both Kaddy and Elijah suffer from Apert Syndrome, a rare genetic condition, which although Kaddy is able to lead a fairly normal life, Elijah requires full time care.

Kaddy’s life was a rollercoaster from birth having been labelled mentally retarded, which at the age of one resulted in her Mother placing her in care. She spent eight years of her life in a residential children’s home for the severely disabled and two of those years she was placed in a hospital for the mentally handicapped. It was a matron who soon realised Kaddy had been misdiagnosed and she was released aged nine into a mainstream children’s home with a view to be being adopted. Sadly, her fate for a better life was quashed after being sexually abused by a foster carer and she ran away before being placed into emergency care. At 17-years she was placed in a council flat to live independently and life finally took a turn for the better when her son Elijah was born.

“Being rejected at birth by my mother stayed with me until Jesus healed me, so when I became pregnant with my son he became my primary focus - my child is very much wanted and loved. I knew my condition was hereditary but to me Elijah is one of the best things that ever happened to me, so I was having him no matter what. He used to be able to sit up, talk and play independently but his life changed for the worse when he developed severe brain damaged at the age of 18 months.

“I spent months of my life on an emotional rollercoaster, with so many unanswered questions trying to come to terms with what had happened. Elijah used to sit up and natter but now he is unable to move or respond. We spent just over a year at the Children’s Trust in Tadworth undergoing rehabilitation before moving to North Somerset in 2009.

I became involved with the North Somerset Parents Forum for a while and then set up a parents luncheon club in Weston-super-Mare in 2011, but I could not self-fund it long term.

“Elijah’s health has deteriorated further with several months of 2013 spent between Frenchay and Bristol Children’s Hospital, as he developed Clostridium Difficile infection - a type of bacterial infection that can affect the digestive system. He later developed a chest infection and at one point was admitted to intensive care.

“Despite 2013 being the most horrendous year I decided to use my experiences to help others. Even after everything Elijah has been through he’s happy, content and no matter what is thrown at him he bounces back. He is my inspiration and the reason I want to help people. There are others out there who are going through the same ordeal or worse situation than me. I want to support and empower parents, children and young people with disability and or ill health.

“I’m Elijah’s mum and I’ve set this company up because I’m sick to death of the injustices in the disability world. When facing a serious health problem parents may feel lost in a world where they have lost the will to live, and so I want to ensure families are well supported. I am offering tangible, practical support to families including helping them to discover what they are entitled to.”

Who are we?

Even after everything Elijah has been through he’s happy, content and no matter what is thrown at him he bounces back. He is my inspiration and the reason I want to help people.

“Elijah’s Hope is keen to promote the importance of Postural Care. People with limited movement are most at risk of developing body shape distortion because they often sit and lie in limited positions. Postural care is about using the right equipment and positioning techniques to help protect and restore body shape. We provide a platform to celebrate and learn from improved outcomes in protecting and restoring body shape by launching the Positive Deviance (PD) Initiative.The PD approach is a problem solving, asset-based approach grounded in the fact that communities have assets or resources they haven’t tapped. The PD approach brings about sustainable behavioural and social change by identifying solutions already existing in the system.

All Children, Young People and Adults, who either have little or no movement, need people who are fully trained in effective therapeutic night-time positioning. Elijah’s Hope can help with arranging quality assured, accredited training in therapeutic positioning and non-invasive measurement of body symmetry. Our first workshops are Postural Care Awareness Days on Thursday 22nd May & Tuesday 10th June. If you would like to attend please contact Kaddy 07577 451 931.

This will include details on:• Measure Clinics • Report writing• Purchase of Sleep equipment • Identifying suitable mobility aids• Training for Parents, Carers, Nurses,

Therapists • Follow up and review • Training up Postural Care Practitioners

Postural Care - Positive Deviance Initiative

My name is Sarah Clayton and I am a married mum with four wonderful children. I grew up in a house in which Postural Care and protection of body shape dominated many things, the working day for both my parents, conversations around the dinner table and I’m pretty sure I was the only person in school whose friends had all had their body symmetry measured. I began working with families supporting children who use Postural Care in the late 1990s and I have been addicted ever since. At that time the concepts of coproduction, positive deviance and outcome focussed service provision, which I will go on to discuss, simply did not feature. In 2007 my world fell apart when my eldest daughter Abi was diagnosed with a malignant brain tumour at just 6 years old, by the time we knew what was happening it had spread throughout the ventricles of her brain and down her spinal cord. It has been a devastating journey for Abi but she, like her mother, is a stubborn little madam and continues to face every day with courage and humour.

The Postural Care mountain – where are we now?Postural Care is a gentle way of protecting a person’s body shape. Any person who finds it difficult to move or to change position effectively may benefit from Postural Care.

Changes in body shape happen silently, mostly when we are asleep in our beds, at a time we would imagine we and those we love were safe from harm. The danger comes from gravity and so no matter what age the person is we must never lower our guard[i]. Ultimately body shape distortion is a killer, it is an enemy we must treat with the reverence and respect it deserves.

The Confidential Inquiry into Premature Death of People with Learning Disabilities[ii] was published in March 2013 and is a harrowing read. The team recommended that adults with learning disabilities are “to be considered a high-risk group for deaths from respiratory problems”. They went on to recommend that alongside access to seasonal flu and pneumonia vaccinations “…CCGs must ensure they are commissioning sufficient, and sufficiently expert, preventative services for people with learning disabilities regarding their high risk of respiratory illness. This would include expert, proactive postural care support, aggressive treatment of gastro-oesophageal reflux, the ready availability of speech and language therapists or other suitably qualified nurses able to undertake swallowing assessments, the development of clear clinical pathways for gastrostomy insertion, and the frequent review of patients waiting for a gastrostomy procedure to protect them from risk of aspirating.”

Our Postural Care Initiative

Postural Care – we’ve a mountain to climb and we’ve only just got our boots on!

I would like to introduce an analogy at this point as we start to think about Postural Care provision in the UK. I have always imagined the ultimate goal, eradication of body shape distortion, as being the summit of a huge mountain.

Just take a moment to imagine this goal, think about a world in which hip dislocation in young children is seen as the glaring exception and not an accepted norm, a world in which young people rarely undergo radical spinal surgery because they just don’t need to, a world in which people can get on and live their lives with minimal chronic pain and discomfort. The view would be amazing wouldn’t it?

If we go back 25 years we can safely say that the vast majority of people did not even know this mountain existed but thanks to awareness raising work such as the wonderful 2010 Mencap campaign[iii] I hope that we have now acknowledged its existence and recognised its sheer enormity.

There is a sense now however that some service providers, despite their best efforts have become stuck in the foothills. I am privileged to work both in the UK and overseas and I am struck by the common difficulties faced by practitioners who are working hard to improve outcomes. There is frustration at the misconception by some commissioners that provision a piece of specialist equipment must mean an improved outcome.

It is as though practitioners have some of the tools they need “we provide sleep systems in this area” and they might be in possession of a map “we have a care pathway in place” but are they really striking out towards the summit and if they are what are their local commissioners doing to support them?

What do sufficient, and sufficiently expert, preventative services look like?

What are the key outcomes that they should aspire to achieve and, if a service is to describe itself as expert and proactive, where is the transparency and sharing of comparable outcomes with other service providers?

We will only ever reach the top together.Postural Care is about making sure that people who are at risk of developing changes in their body shape are supported as symmetrically as possible, as comfortably as possible, 24 hours a day. It involves equipment such as wheelchairs, walking aids, standers, alternative seating, orthotics and night time positioning equipment, it is helped by active therapy and encouraging movement and it is directed by measurement of body symmetry. Most importantly Postural Care involves individuals, their families and personal assistants working alongside health and social care practitioners to coproduce effective, person centred solutions to often complex challenges. Over the past 25 years we have come to understand how and why the body changes shape, we have developed incredible equipment and technology, we know that people need timely access to this equipment and have the Community Equipment Code of Practice Scheme[iv] but we have only just begun to grapple with the concept of coproduction. Henry Ford is quoted as saying that “Quality means doing it right when no-one is looking” and this couldn’t be more true of Postural Care provision. We don’t see amazing results because a therapist has a Masters level qualification or a Doctorate, we see amazing results when we enable, inspire, motivate and trust families and personal assistants.

Working in partnership with families, personal assistants and practitioners is for me the most exciting part of this journey. The biomechanics, the equipment, the technology – they are all very interesting and helpful but there is nothing that compares to the buzz of seeing people succeed, of supporting a parent to fashion a solution that best suits their circumstances, of seeing a family whose happiness, health and wellbeing are inextricably linked to one another doing well. It is this passion, this drive and this sheer determination that exists within families that practitioners need somehow to capture, to embrace and to nurture if we are to ensure that at 2am the pillow, towel or teddy bear is in exactly the right place.

Clair Lewis’s poem ‘Mother – Care’ gives a sense of this commitment and drive, here is an extract:

I am her MOTHERher full time adorerwho explodes when she smileswhose heart breaks when she crieswho worries constantlyand continually shedsthe tears which cushion herride through this messI’m here because I love herhow about you?don’t compare my contributionto what you do.

Clair Lewis http://www.johnnypops.demon.co.uk/poetry/poetry/mothercare.htm

Positive Deviance and Outcome Focussed Postural CareThe concept of Positive Deviance is one that we as an organisation have embraced wholeheartedly[v]. There is a wealth of information about Positive Deviance

available and this is not the place to go in to too much detail however, put simply, it is about looking for the people who achieve a better outcome than the majority when faced with the same problem. In the UK we are actively searching for the services, families and organisations that achieve great results in relation to Postural Care and we are asking them two simple questions, what have you done and how have you done it? My experience as a parent of a child that has undergone treatment for cancer has taught me what it is like to be supported by an outward looking team. What do I mean by this? I mean that the world of paediatric oncology is one in which a collaborative approach, a sharing and acknowledgement of better results, leads to improved services for children like mine. The team supporting us as a family are constantly talking to, working with and supporting other teams from around the world to improve treatment outcomes. It is a model that we as an organisation aspire to and hope we can support by sharing results from around the world. A wonderful example of Positive Deviance can be found in Wakefield.

GMFCS

Gross Motor Function Classification Scale

1

Children who can walk, run, jump and climb stairs but who have some impairment of speed, balance and/or coordination

2

Children who can walk in and outdoors and climb stairs but have some difficulties with such things as uneven ground or crowds

3

Children who use walking aids but use wheelchairs for long distances

4

Children who use walking aids for short distances but use wheelchairs most of the time

5

Children who use wheelchairs for all mobility and need postural support in order to be able to sit comfortably

Total number of children and young people aged 0-18 supported by the service

Hips dislocated 75% Migration over 75% of femoral head uncovered by acetabulum

Wakefield 122 106 46 274 0

Table 1: Outcome data for physiotherapy services in Wakefield district

There are a total of 274 children and young people aged between 0 and 18 who access the physiotherapy service in Wakefield led by Suzanne Carter, of these 122 have a Gross Motor Function Classification Scale (GMFCS) of 1, 106 have a GMFCS of 2 or 3 and 46 have a GMFCS of 4 or 5. In answer to the question ‘What have you done?’ they have reached the summit. Not a single child or young person accessing this service has a dislocated hip and in the past 12 months only 4 have undergone preventative soft tissue surgery.

The response to the second question is more complicated and can be found here www.posturalcareskills.com/living-university but in essence they are wholly outcome focussed. Over the past 25 years a culture of impunity has developed in which basic, person-centred outcomes are not being recorded, collated or shared. If you want to know how successful a school is in teaching maths you don’t ask how many maths lessons each child receives – you look at the results and compare them with similar schools.

The work in Wakefield gives individuals and their families, commissioners and service providers a benchmark, surely if we are to see improvements in services we have to be asking each and every area what are their outcomes and how do they compare?

In Suzanne’s own words

“This service hasn’t happened overnight, it has developed over the last 9 years to give us the successful outcomes of today. The important points to stress are that it is by giving the families some control and positive expectations for their children that go more than halfway to bringing them success. Also, this has been a result of long term, dedicated staff who are happy to work alongside each other to develop a service giving our children the right to expect these positive outcomes.”

Whilst Suzanne and her team have achieved a great deal working in partnership with families they are also very aware that their service is vulnerable to change, she continues to work closely with the local commissioning team to ensure everyone understands the outcomes they are being paid to deliver.

I come back to the idea of our mountain, of how far we have to go and of the summit. 25 years into the future we will live in a world in which hip dislocation in young children is seen as the glaring exception and not an accepted norm, a world in which young people rarely undergo radical spinal surgery because they just don’t need to, a world in which people can get on and live their lives with minimal chronic pain and discomfort.

They are already having a cup of tea and looking out at the view in Wakefield so if your initial reaction to this vision was scepticism this is an opportunity to reflect, a chance to reconsider what might be possible if only we were brave enough to look up.

[i] Hill, S. and Goldsmith, J., ‘Biomechanics and Prevention of Body Shape Distortion’, The Tizard Learning Disability Review, Vol. 15, Issue 2, pgs. 15 – 29, 2010

[ii] Heslop et al: “Confidential Inquiry into the Premature Death of People with Learning Disabilities: Final Report.” Norah Fry Research Centre, March 2013

[iii] Postural Care Action Group www.mencap.org.uk/posturalcare

[iv] Community Equipment Code of Practice Scheme (CECOPS) www.cecops.org.uk

[v] The Postural Care Living University www.posturalcareskills.com/living-university

PMLD Link Article December 2013Posted on January 5, 2014 by Sarah ClaytonThis article was published in PMLD Link in December 2013. This journal is dedicated to promoting best practice and information to improve the lives of individuals with complex physical and learning disabilities. You can subscribe to PMLD Link at http://www.pmldlink.org.uk/

Protection of body shape – a better quality of life for individuals with complex physical needs.What is a Postural Care Awareness Day? Recommendation 9 of CIPOLD states that people with Learning Disabilities be considered at high risk of respiratory illness and should have access to proactive, expert, preventative postural care services – but what does this mean and how do we know we are providing it? An Awareness Day provides people with an opportunity to learn about the general principles of postural care, to discuss their role in supporting postural care provision and to consider some of the lessons that have been learned by others.

What will we cover during the day?We are able to cover a range of topics from our accredited course programmes and so we can be flexible with our Awareness Day content. Usually people ask us to cover the following topics: how and why does the body change shape; protection of the hips and pelvis; protection of the chest and spine; safety planning; thermal comfort; how to demonstrate objective outcomes.

We usually offer a practical session during which we demonstrate how to position an individual in lying.

Who might benefit from attending? Anyone with an interest in supporting individuals to access 24 hour postural care or those with a responsibility to demonstrating outcomes in relation to service provision.

We want to invite both practitioners and family carers, is that OK? Absolutely. We are passionate about supporting everyone to learn together, in 2010 we were shortlisted for an Accolade Award for most effective practice in workforce development for doing just that!

How long will the day last and how many people can come along?We can offer a range of times to suit your organisation including evening sessions. We find that a maximum number of 30 people allows for constructive discussion without overwhelming those who wish to ask questions.

9.30am Welcome and Introductions

10.00am Presentation and Discussion ‘How and why does the body change shape – protecting the hips, pelvis, chest and spine’

11.30am Coffee Break

11.45am Presentation - The Family Project, what can we learn from people that have done this before?

1.00pm Lunch

1.45pm Practical Activities – predicting body shape distortion

2.15pm Safety Planning

3.00pm Plans for the future

4.00pm Close

Sample Awareness Day Programme

©Postural Care CIC 2014

Protection of body shape – a better quality of life

for individuals with complex physical needs What is a Postural Care Awareness Day? Recommendation 9 of CIPOLD states that people with Learning Disabilities be considered at high risk of respiratory illness and should have access to proactive, expert, preventative postural care services – but what does this mean and how do we know we are providing it? An Awareness Day provides people with an opportunity to learn about the general principles of postural care, to discuss their role in supporting postural care provision and to consider some of the lessons that have been learned by others. What will we cover during the day? We are able to cover a range of topics from our accredited course programmes and so we can be flexible with our Awareness Day content. Usually people ask us to cover the following topics: how and why does the body change shape; protection of the hips and pelvis; protection of the chest and spine; safety planning; thermal comfort; how to demonstrate objective outcomes. We usually offer a practical session during which we demonstrate how to position an individual in lying. Who might benefit from attending? Anyone with an interest in supporting individuals to access 24 hour postural care or those with a responsibility to demonstrating outcomes in relation to service provision. We want to invite both practitioners and family carers, is that OK? Absolutely. We are passionate about supporting everyone to learn together, in 2010 we were shortlisted for an Accolade Award for most effective practice in workforce development for doing just that! How long will the day last and how many people can come along? We can offer a range of times to suit your organisation including evening sessions. We find that a maximum number of 30 people allows for constructive discussion without overwhelming those who wish to ask questions. How much does it cost? We charge a standard day rate of £550+VAT at 20%. We also ask that our travel and accommodation costs are covered, please don’t hesitate to contact Sarah [email protected] or Polly [email protected] for a quotation or to discuss your needs further.

©Postural Care CIC 2014

Protection of body shape – a better quality of life

for individuals with complex physical needs What is a Postural Care Awareness Day? Recommendation 9 of CIPOLD states that people with Learning Disabilities be considered at high risk of respiratory illness and should have access to proactive, expert, preventative postural care services – but what does this mean and how do we know we are providing it? An Awareness Day provides people with an opportunity to learn about the general principles of postural care, to discuss their role in supporting postural care provision and to consider some of the lessons that have been learned by others. What will we cover during the day? We are able to cover a range of topics from our accredited course programmes and so we can be flexible with our Awareness Day content. Usually people ask us to cover the following topics: how and why does the body change shape; protection of the hips and pelvis; protection of the chest and spine; safety planning; thermal comfort; how to demonstrate objective outcomes. We usually offer a practical session during which we demonstrate how to position an individual in lying. Who might benefit from attending? Anyone with an interest in supporting individuals to access 24 hour postural care or those with a responsibility to demonstrating outcomes in relation to service provision. We want to invite both practitioners and family carers, is that OK? Absolutely. We are passionate about supporting everyone to learn together, in 2010 we were shortlisted for an Accolade Award for most effective practice in workforce development for doing just that! How long will the day last and how many people can come along? We can offer a range of times to suit your organisation including evening sessions. We find that a maximum number of 30 people allows for constructive discussion without overwhelming those who wish to ask questions. How much does it cost? We charge a standard day rate of £550+VAT at 20%. We also ask that our travel and accommodation costs are covered, please don’t hesitate to contact Sarah [email protected] or Polly [email protected] for a quotation or to discuss your needs further.

Postural Care Awareness DayPostural Care CIC are a social enterprise specialising in the development and delivery of accredited postural care training.

We are able to offer:

Nationally recognised training in the use of postural care and measurement of body symmetry in partnership with OCNWMR

Support for both families and therapists who are looking to provide postural care for individuals with complex body shape

Train the trainer courses for therapists and other health or social care professionals who wish to deliver accredited training

Please visit our website:www.posturalcareskills.com

or contact [email protected] who will be more than happy to discuss how we might be able to help.

University of Bristol - CIPOLD is the Confidential Inquiry into premature deaths of people with learning disabilities.

CIPOLD is funded by the Department of Health.

We aim to improve the health and well-being of people with learning disabilities by carrying out an inquiry into their death.

For general enquiries contact the CIPOLD office:

Email: [email protected]

Tel: 0117 331 0980

Norah Fry Research Centre8 Priory RoadBristolBS8 1TZ

If you would like to keep up to date with what we are doing here at Elijah’s Hope then you can:

Follow us on Twitter: @ElijahsHopeCIC

Like our Facebook page: www.facebook.com/ElijahsHope

Connect with us on LinkedIn: www.linkedin.com/in/elijahshope

Add us on Google+:Kaddy Thomas

Social Media

Supported by

Postural CareProtecting and restoring body shape

Do you support someone with multiple disabilities or are you responsible for commissioning services for them?

If the answer is yes, you need to know about postural care.

Supported by

Postural CareProtecting and restoring body shape

Do you support someone with multiple disabilities or are you responsible for commissioning services for them?

If the answer is yes, you need to know about postural care.

For more information visit: www.mencap.org.uk

Mencap and a number of organisations, including Postural Care Skills, PAMIS, the Chartered Society of Physiotherapy and the Royal College of Nursing came together in 2008 to form the Postural Care Action group.

Together we wanted to raise awareness about the importance of postural care. Postural care is about protecting body shape for people with complex healthcare needs and movement difficulties, such as those with profound and multiple learning disabilities.

People who find it hard to move are most at risk of developing body shape distortions. This is because they often sit and lie in limited positions. Postural care is about using the right equipment and positioning techniques to help protect and restore body shape. The earlier the intervention, the better - but it is never too late to start protecting someone’s body shape.

Failure to protect body shape can have serious consequences for a person’s health and quality of life. It can even cause premature death.

Over the last couple of years we have been running an awareness-raising campaign to tell more people about this important issue.

The campaign is aimed at all those who support people with multiple disabilities or who commission services for them.

We want to challenge the assumption that distortion of body shape is inevitable for people with multiple disabilities. We want all people with multiple disabilities to get the support they need to protect their body shape, 24 hours a day.

The booklet, film clips and presentation can be viewed at:

www.mencap.org.uk/posturalcare

Please use these materials to help spread the word. We want as many people as possible to understand the importance of postural care.

The importanceof protecting body shape

11

12

What postural care services are needed?

The commissioning of postural care services should be a key part of the local strategy to meet health needs. The following should be provided:

Information There needs to be good information available for families about local postural care and training services.

Training Postural care is a simple, practical approach but it is not intuitive, so professionals and families must get the information and training they need to do it properly and safely.

Postural care pathwayThere needs to be a clear postural care pathway in place, which involves professionals and families working together to support someone’s posture.

A postural care pathway will involve:

• early identification of people who have, or are likely to develop, postural care needs• assessment using measurements of body symmetry• training for all involved• developing a postural care plan for the individual and getting the right equipment• ongoing monitoring and reviewing of the support needed.

Funding for equipmentThere must be funding available to enable people to get the equipment they need – for example, a sleep system.

We have produced a booklet and some short filmclips explaining why postural care is important and what you can do to take action to ensure that appropriate postural care services are developed in your local area. We have also developed a powerpoint presentation, which you could use to tell other people about the importance of postural care.

“

*Workshops:Postural Care Awareness Day • Thursday 22nd May - Bristol• Tuesday 10th June - Bristol

* The Parent CafeParents weekly evening support group meet on Tuesday’s every week at The Barn, Clevedon 19:30 until 21:00

Workshops & EventsAs part of our on-going commitment to helping people in need, Elijah’s Hope stages regular workshops and monthly luncheons. We will be launching the Postural Care - Positive Deviance Initiative in May starting in Bristol and we will cover the whole of the South West.The aim of our events will be able to bring likeminded people together to share their experiences and offer one to one peer support.

Also, in May, we will be running the first of our Swimathon’s at Kings Fitness & Leisure Centre in Cheddar (booking form below). We are hoping to put on a whole series of these in each county in the South West so visit our new website at www.elijahs-hope.org, download a form and get fundraising!! You can also use our form below, just complete and return.By raising cash you will be changing children’s lives for the better. All money raised will be split between Elijah’s Hope and also CDKL5 (www.cdkluk.org).

Please find details below of our upcoming events:

Name .........................................................................................................................................................................................

Address .....................................................................................................................................................................................

......................................................................................................................................................................................................

Telephone / Mobile ................................................................................................................................................................

Email .........................................................................................................................................................................................

Team entry Yes No

Names of team members .....................................................................................................................................................

......................................................................................................................................................................................................Individual entry Yes No

Payment required on booking

Group = £ ___________

Individual = £ ___________

Return the completed booking form and entry fee to:

Kaddy Thomas, Elijah’s Hope CIC, 41 Churchill Avenue, Clevedon, North Somerset BS21 6QN

Cheques made payable to Elijah’s Hope CIC

✂ELIJAH’S HOPE SWIMATHON BOOKING FORM

SWIM THE CHANNEL?CAN YOU

W THE FUN!

Saturday17th May 2014 12:00 to 5:00pm

Kings Fitness & Leisure Cheddar

POOLING CASH FOR ELIJAH’S HOPE AND CDKL5

Kings Fitness & Leisure | Station Road | Cheddar | Somerset | BS27 3AH

Support today, hope for the future...

CIC

JOIN US TAKE THE PLUNGE AND SIGN UP FOR A SWIM THE ENGLISH CHANNEL EVENT You won’t actually swim the channel of course, we are looking for teams or individuals to swim in total 21 miles for 2 worthy causes - Elijah’s Hope & CDKL5By raising cash for Elijah’s Hope and CDKL5 UK you’ll be helping to change children’s lives for the better because the money raised will be ploughed back into the company, which helps ill or disabled children and their families.

CDKL5 UK is a UK based charity that has been set up to raise awareness and vital funds for the global research effort. The trustees of CDKL5 UK are made up of parents living with a child with CDKL5 as well as family and friends who all share the same goal. CDKL5 is classed as a orphan disease, as it affects a small percentage of the population.

Teams (max 5) £25.00 Adults £10.00Children & Young People £6.00Sponsorship forms can be downloaded via our website.

www.elijahs-hope.orgPlease take part and help to make a difference.

Minimum sponsorship is £100.00 for Single entries and £350.00 for Teams

Entries

Parent Forums

The Bournemouth Parent and Carer Forum are involved with consultations regarding all kinds of changes that are going to impact on families with children/adults ages from 0 – 25 years old with may have Special Educational Needs, Complex Medical, Social, Emotional, Behavioural and other disabilities.We offer a specialist consultation and participation service that gives parents and carers a voice about the services and support their children and families receive. So by listening we can clearly identify what is commonly working well, what needs improving and what is missing – also referred to as “gaps in provision”. The feedback we gather is fed back via meetings with Bournemouth Borough Council, NHS, Social Services and other agencies.

We hold regular events such as workshops, training, coffee mornings, advice, peer to peer support.

Email: [email protected]: www.parentcarerforum.co.uk Registered Charity Number 1151503

Are you a parent of a child or young person with a disability and/or additional needs?Are you concerned about your child’s behaviour or social skills? Do you sometimes wish you had someone to talk to?Come along to the Parent Cafe.We are a group of parents with children and young people with additional needs. We are here to support, listen, chat to and get information from.You do not need to have a diagnosis for your child to come along!Every Tuesday at The Barn, ClevedonFrom 7.30pm – 9pmJust come along, there is no charge and refreshments are available. Please contact us if you would like to come along as the venue may change.Contact Angie or Lorna [email protected] [email protected] phone 07910 265513

BOURNEMOUTH

PARENTCARERFORUM

THE PARENT CAFE

PARENT CARER COUNCIL FOR CORNWALLOur aim is to gather information from Parent Carers and using these unique shared experiences, we take part in consultations and participation work which helps us to shape the development and delivery of services to our children. We also pass on information to families via a newsletter enabling parent carers to gain greater knowledge and understanding of the services available from health, education, local authority and the voluntary sector.

Contact Details: Kay Henry 07973 763332 • [email protected]

http://www.parentcarercouncilcornwall.org.uk

CAKECare, Advice, Knowledge, Empathy

  Founded in 2008, the Wiltshire Parent Carer Council (WPCC), is an independent voluntary organization, which is managed and run by parent carers, for parent carers. We provide a consultation and participation service which enables parent carers to have a voice services and support their children and families use. This service offers real opportunities to influence and shape provision. We also provide the Special Educational Needs and Disabilities Information Service, which offers a wealth of information as well as signposting to specialist services.  Our bespoke website aims to give visitors an enjoyable experience in accessing the information they require, or finding out things they never knew about! Contact one of the team to support you through the website, or to access information. We are open from 10am-5pm Monday-Friday.

 (Moving 13/3/14)!!!! – but email is the same Wiltshire  Parent  Carer  Council,  Freepost  RSXC-­‐YTUB-­‐KTBL,  Fordbrook  Business  Centre,  

Unit  3,  Marlborough  Road,  Pewsey,  Wiltshire,  SN9  5NU  [email protected]     01672  569300  

Improving Services for Disabled Children

WILTSHIRE PARENT CARER COUNCILFounded in 2008, the Wiltshire Parent Carer Council (WPCC), is an independent voluntary organization, which is managed and run by parent carers, for parent carers.We provide a consultation and participation service which enables parent carers to have a voice services and support their children and families use. This service offers real opportunities to influence and shape provision.

We also provide the Special Educational Needs and Disabilities Information Service, which offers a wealth of information as well as signposting to specialist services.

Our bespoke website aims to give visitors an enjoyable experience in accessing the information they require, or finding out things they never knew about!

Contact one of the team to support you through the website, or to access information.

We are open from 10am-5pm Monday-Friday.

(Moving 13/3/14)

Wiltshire Parent Carer Council, Freepost RSXC-YTUB-KTBL, Fordbrook Business Centre,

Unit 3, Marlborough Road, Pewsey, Wiltshire, SN9 5NU

[email protected]

01672 569300

Contact a Family is the only national charity that exists to support the families of disabled children whatever their condition or disability. With over 30 years of experience, our vision is that families with disabled children are empowered to live the lives they want and achieve their full potential, for themselves, for the communities they live in, and for society. It’s why we offer support, information and advice to over 340,000 families each year and campaign for families to receive a better deal.

Contact a Family offers a range of ways for parent carers to get the support, advice and information they need. This includes:

• Our free national helpline – 0808 808 3555 – where you can speak to one of our expert advisors for information, advice and help on any aspect of caring for a disabled child. Our parent advisers are available on our helpline Monday to Friday, 9.30am to 5.00pm. Alternatively you can email: [email protected], post an enquiry on Facebook or Twitter.

• Our benefits and welfare experts are also on hand via our helpline to provide you with the practical advice and support to help you find the best way through the benefits and tax credit maze.

“I am so glad I got the opportunity to have the help and support from Contact a Family. I can’t begin to explain how they helped me and my family through a very difficult time.” Helen, mum.

• We work across the UK to offer local support, advice and information in your area.

• Our education service is aimed at parents with, or who suspect their child may have, special educational needs (SEN).

• Contact a Family publishes a range of guides available online and in print covering all aspects of raising a disabled child.

• Relevant, up to date and validated information on hundreds of disabilities and conditions is available via our online medical directory. Find out more about the causes, symptoms, treatment and the support available.

• makingcontact.org is our special linking website which connects families going through similar experiences.

• Supported by Contact a Family, our parent support groups are an ideal way to meet other parents and carers for friendship, for opportunities to socialise and to share information.

For more information about all of Contact a Family’s information, advice and support services please visit www.cafamily.org.uk

Parent Partnership Services (PPS) offer free, confidential advice, information and support to parents and carers about special educational needs and disability (SEND).In North Somerset this service is provided by Supportive Parents.

We are one of the most established independent Parent Partnership Services in the country offering effective partnership working with families and statutory services for the last 24 years!

Supportive Parents is a charity providing information and support to families of children with any type of special educational needs (SEN) from 0-19 years in North Somerset.

We are an independent organisation offering a free, confidential and impartial service to any parent who has a concern about their child’s Special Educational Needs and/or disability. We encourage parents and professional to work more closely together in the interests of the children, to voice the views of parents and raise awareness of SEN.

Our service consists of:

• Information and Support Line Open 10am-2pm, Monday, Wednesday and

Friday during term time only - 0117 9897725 (answerphone at all other times)

• Help with paperwork and preparation for meetings.

• We run a monthly support group alternating between The Firs in Weston Super Mare and The Firs, St Barnabas, Portishead.

• The local coordinator works to support the local Parent Carer Forum, Our Voice Counts and has facilitated the SEN parent/carer workshops since the forum was established in 2008.

• Free parent courses designed to give an overview of relevant Education policies and specific information relating to special educational provision.

• Courses aimed at SENCO’s, school governors and trainee Educational Psychologists.

• Regular E bulletins, to keep you up to date with information and SEND developments.

• Termly newsletter available on our website or hard copy if required.

Feedback from Service users;

“Over the past 7 years Supportive Parents have helped with just about every aspect of our needs. Always very friendly, understanding and incredibly useful.” Comment from North Somerset Parent

“Big thank you for a lovely, helpful and friendly support group last week.” Telephone call from a North Somerset Parent

“Thank you Supportive Parents, for your support in the weeks running up to and at the school meeting. You’re amazing!!”Facebook comment from a North Somerset parent

“I wanted to say a massive thank you for all your help, both before and during the meeting. It was fantastic to have the support and it gave us much more confidence going into the meeting” Email from a North Somerset Parent

For further information please visit our website www.supportiveparents.org.ukOr visit our Facebook and Twitter pages.

3rd Floor, Royal Oak House, Royal OakAvenue, Bristol BS1 4GBInformation & Support: 0117 989 7725 10 am – 2 pm Mon, Wed & Fri during term timeAnswer phone at all other timesParent Enquiries Email: [email protected]

Admin: 0117 9897724Email: [email protected]

What is a ParentPartnership Service?Local Authorities are required toprovide a Parent Partnership Servicefor parents. Supportive Parentsprovides this service across threeareas, Bristol, North Somerset andSouth Gloucestershire.

Parent Partnership Services (PPS)are statutory services offeringinformation, advice and support to families of children and youngpeople with special educationalneeds, developing partnershipsbetween parents and professionals.

Registered Charity No: 1079761 Registered in England and Wales as Supportive Parents for Special ChildrenCompany limited by Guarantee No. 3905996

Local Co-ordinatorsBristolDavina Evans

North SomersetJackie Oxley

South GloucestershireKathryn Mason

Working in Partnership with:

If you need this document in a differentformat such as Braille, large print, audiotape or computer disk, or in communitylanguages, please contact us.

Providing the Parent PartnershipService for Bristol, North Somersetand South Gloucestershire

FOR PARENTS AND CARERS OF CHILDREN WITH SPECIAL EDUCATIONAL NEEDS AND DISABILITY (SEND)

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41 Churchill Avenue, Clevedon, North Somerset BS21 6QN Tel: 01275 269359 Mob: 07577 451931Email: [email protected] Web: www.elijahs-hope.org

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Registered Office: Elijah’s Hope CIC, Hollingdale Pooley, Bromford House, 23 Westfield Park, Clifton, BS6 6LT Tel: 0117 973 3377 Fax: 0117 973 3371 Company No: 8661632

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