Kidz to Adultz Magazine Issue 16

ISSUE 16 / MARCH 2022

IN THIS ISSUE...

THE SILENCED PANDEMIC – LONG COVID & CHILDREN SUPPORTING DISABLED PARENTS HANNAH GETS PEOPLE MOVING WITH ZUMBA ACCESSORIES TO SUPPORT TOILET TRAINING KIDZ TO ADULTZ MIDDLE – FULL PROGRAMME WHEN SOMEONE CLOSE TO YOUR CHILD DIES

I'M ONE VERY LUCKY GIRL! an awesome specialised bed from Centrobed

Carmela Chillery-Watson, from Wiltshire, lives with LMNA-CMD which is a progressive muscle wassng disease which weakens every muscle over me affeccng the ability to walk and use her arms and hands.

Since her diagnosis aged just three, Carmela and her family have worked endlessly to help fund vital research into potennal treatments and ullmately towards a cure Some of Carmela’s fundraising challenges have included walking a kilometre a day for 30 days and a 100-day fitness challenge to share kilom physiotherapy exercises and inspiraaon.

To mark the end of Carmela’s 100-day fitness challenge, Centrobed were delighted to deliver Carmela a bespoke Caribbean Bed, complete with Wonder Woman theme!

The Caribbean is a paediatric, fully profiling bed that turns, has independent leg movement, and will grow with the child. This specialist speciali bed has a wide range of movements available that can help children reposiion and find comfort with minimal intervennon.

(An automaac turning system is available)

The Caribbean is suitable for children of all ages, from toddler to teen with a starrng length of 60” growing to 66” then finally 72”. The Caribbean can have its frame and panels customised to the user’s own personal preferences. Choose the colour and theme to complement any room Carmelas mum, Lucy: ‘Every single member of staff we have spoken to are incredible. They all genuinely have interest in welfare and care and their customer service is outstanding.’

UK's leading manufacturer of bespoke specialist beds & cots. www.centrobed.com t: 01233 635353 e: sales@centrobed.com 2

Welcome!

WELCOME TO OUR LATEST ISSUE

S

pring is just around the corner, and I certainly hope we have turned a corner in relation Covid. It does now seem as though the most challenging times are behind us.

This is the first of five editions of the Kidz to Adultz magazine for 2022, and we plan to bring you some excellent content this year. In this edition we hear about Hannah Payton’s tremendous achievements including becoming the first person in the UK with Down’s Syndrome to become a Zumba instructor. Hannah’s love of Zumba took off during lockdown and inspired her to take a hobby to the next level. In complete contrast to Hannah’s positive experiences, Sammie McFarland, the founder of the charity Long Covid Kids, updates us on the longer term impact of Covid-19 on children.

Enabled to Parent is a relatively new charity, founded by Sarah Fay, a disabled parent and occupational therapist. Sarah shares with us the possibilities and outcomes of adaptive parenting. Phab are celebrating 65 years of delivering inclusive holidays and highlight their ever-expanding services.

The first Kidz to Adultz exhibition for 2022 is at the Coventry Arena in March and you will get a sneak peak of the full seminar programme inside this issue.

And there is so much more besides!

We hope you find the magazine useful and remember, please let us know what you think. If you have a story that you would like to tell us about for the next issue, which will appear in May, then please do get in touch by contacting us at magazine@disabledliving.co.uk

CONTENTS...

Hannah gets people moving with Zumba.............4 When someone close to your child dies..................8 A vital year of campaigning...................... 12 Enabled2Parent providing support for disabled parents & those with additional support needs................... 15 Kidz to Adultz Middle....... 19 Celebrating 65 years of Phab................................ 24 Accessories to support toilet training..................... 26 Long Covid Kids: the road so far................... 30 Developing Snoozzzy....... 34 Nerve Tumours UK: Supporting people with neurofibromatosis............ 36

Carmel Hourigan Editor & Manager Kidz to Adultz Exhibitions

FANCY BEING IN THE NEXT ISSUE?

If you would like to talk to us about promoting your company or organisation in the next issue of Kidz to Adultz magazine, call us on 0161 214 5959 or email us at magazine@disabledliving.co.uk

Disabled Living, Burrows House, 10 Priestley Road, Wardley Industrial Estate, Worsley, Manchester, M28 2LY

3

HANNAH GETS PEOPLE

moving with Zumba HANNAH PAYTON HAS GAINED RECOGNITION FOR BECOMING THE FIRST PERSON IN THE UK WITH DOWN’S SYNDROME TO BECOME A ZUMBA INSTRUCTOR AT JUST 24 YEARS OLD. BUT HER ACHIEVEMENTS DON’T STOP THERE. SHE SPOKE TO KIDZ TO ADULTZ MAGAZINE ABOUT SMASHING RECORDS, WINNING MEDALS, HELPING OTHERS AND ENJOYING LIFE.

L

ike many people, Hannah spent lockdown taking exercise classes on Zoom. Hannah’s class of choice was Zumba, a dance exercise class with roots in Latin music, with

4

a mixture of high and low intensity cardio set to the beat. Unlike most, however, Hannah decided to take this new found passion further. “I did training with Sandra whilst we were

in lockdown on the laptop and copied what she was doing. In the end I got an instructor license certificate and then I became a Zumba instructor.”

Hannah is one of 1.5 million people in the UK with Down Syndrome, a genetic condition that often causes some level of learning disability, though the condition varies from person to person. Being born with Down’s Syndrome hasn’t prevented Hannah from following her passion, saying “just do what you do, and do your best.” In fact, Hannah’s Zumba instruction is a way to keep doing what is important to her: “I like making everybody happy. I get so excited. Have some fun!”

Making the transition from participating in the class to learning to be a Zumba instructor wasn’t easy, but Hannah was motivated by the support of her trainers. Now that Covid restrictions have lifted, this motivation isn’t dimmed by the early starts and travelling to the Zumba studio: “I love getting up early all the time…It makes me feel excited to go and do Zumba every morning.”

This is just part and parcel of a job that Hannah adores. “I love being a Zumba instructor. I am really happy,” she says.

Hannah recently appeared on Steph’s Packed Lunch on Channel 4.

Not only did she get to practice her instructing skills by teaching some Zumba moves on live television, but she was interviewed as well: “I was on my mark, and I was dancing. They were asking questions…I found that really great.”

Zumba isn’t the only sport that Hannah enjoys. She won badminton and swimming medals at the Special Olympics in Glasgow. Founded in 1968, the Special Olympics are a competition and year-round programme that gives children and adults with intellectual disabilities the opportunity to develop their physical fitness.

Beyond sport, Hannah is always on the go. She enjoys volunteering, donating her time to the registered charity Makants Greyhound Rescue in Greater Manchester, “helping out with the greyhounds, cleaning beds

and washing dog bowls. I do that a couple of times a week.” Hannah’s positive outlook helps her tackle even life’s more serious side. “I did Race for Life. It’s a shame that one Zumba instructor, Emma, has breast cancer and I was raising money for her. My mum had cancer as well, but she’s fine now. My mum’s mum from Germany had cancer as well. And so we’re beating cancer for all those three.”

For Hannah, life is about enjoying what you do. Whether it’s a music festival (“the best thing is everyone dancing like mad in the mosh pit.”) or climbing mountains with her family in Yorkshire, Hannah tells us that the most important thing is to stick with it: “Keep going. Never give up. Keep going.”

5

The day your child is diagnosed with a vision impairment is not an easy one. But it’s also the day Guide Dogs’ support starts.

And it never stops.

In those early days, Guide Dogs were really the only service who connected everything and allowed us to find our feet as a family.

Call us today to find out how we can help you and your child, or visit our website to explore a wide range of relevant resources.

Angela, mum to Tom

0800 781 1444 guidedogs.org.uk/familysupport

The Guide Dogs for the Blind Association is a company limited by guarantee and a registered charity in England and Wales (209617) and Scotland (SC038979). A101 1/22

close

WHEN SOMEONE

TO YOUR CHILD DIES

SAMANTHA GARNER, MENTAL HEALTH AND SPECIAL EDUCATIONAL NEEDS (SEN) SPECIALIST, DISCUSSES HOW TO HELP A CHILD WITH ADDITIONAL NEEDS THROUGH THE PROCESS OF GRIEF.

W

hen someone important to us dies, we are bereaved. The process we go through getting over the bereavement is called grief. Grief is basically adjusting to the loss, a process whereby we become more accustomed to that person not being there. Unfortunately, there is no way of avoiding that process, it can be delayed but it cannot be avoided.

We have to go through the process.

There are models that talk about the five or seven stages of grief; however, they’re not set in stone and each person’s grief is different.

8

So how can we help someone go through the process? In particular if it is our child, and/or someone who struggles with understanding and/or communication because of a complex disability.

The first thing we must recognise is that we cannot stop the grief process happening. It has to happen, it’s part of life. That’s really hard because we want to protect those close to us from as much pain as possible.

But we can’t. What we can do is go through the process with them and support them to acknowledge and talk about their feelings.

We also have to be honest about death. This is hard as very often we will use euphemisms around death in the hope that it won’t be as hurtful.

‘Oh, they’ve gone to sleep,’ or ‘they’re with God now’. The problem is that it still hurts as the person isn’t there anymore and then there can be confusion about where they are.

If they’re sleeping or with God, why aren’t they coming back to see me?

Don’t they love me enough to do that?

We have to do our best to help them realise that death is permanent, it happens to everyone,

their heart stopped beating and their body doesn’t work anymore.

They won’t be coming back. It’s also important to help them realise the death wasn’t in anyway their fault. It may seem obvious to us, but children can make the most bizarre connections. Reassure them regularly it’s not their fault and they are still loved.

One of the most important parts of the grief process is to allow your child to feel whatever emotions they feel and whenever they feel them.

No emotion is wrong, even laughter.

Did you know that laughter is a reflex action the same as the fight/flight/ freeze response? We laugh because we cannot cope with the intensity of the threat or emotion, and we need to reduce it.

As a parent we need to always acknowledge the emotion. This can be hard because seeing our child in pain is hard and our automatic reaction is to cheer them up somehow. But all this is doing is dismissing pain, it’s not allowing it to be processed.

The pain is real and needs to be acknowledged. It’s ok to be sad. It’s normal. Allow it to happen.

If your child has difficulty expressing their emotions, then monitor their behaviours for changes in emotion, or their physical health - it’s well documented that grief can affect us physically. Some common ways in which distress can be displayed are: • changes in eating habits • shouting or anger • crying • disruptive behaviour • reverting to behaviour from when they were younger • lack of interest in usual activities • difficulty sleeping • reduced communication with others • sickness/upset stomach • additional tiredness Provide opportunities for emotions to be expressed using their usual communication methods e.g. picture exchange communication system, artistically and so on. When asking how they are feeling, be careful not

to infer your opinion when asking.

It’s a common joke that therapists always ask, ‘and how did that make you feel’. This phrasing is used because it’s not helpful to transfer opinion by saying ‘did that make you feel sad?’ This pre-empts an answer.

Whatever they feel, acknowledge how they feel and hear them. It’s their feeling and not yours. Allow space and time to be sad. Don’t be afraid to talk about how it makes you feel sad and angry as well. Grief isn’t a solo journey. Chances are the person who died was close to you as well so make sure you acknowledge and talk about your feelings too.

Sometimes we also have to acknowledge that our child will not want to communicate their emotions to us as their parent. This has certainly been true with my children.

It’s not that they didn’t love me, but more that they didn’t want to upset me. I made sure they had someone else they could talk to freely.

Whilst the grief journey is taking place remember that routine is likely to be very important. The death of a person close to us often makes our world feel unsafe for a while, so having routine in the other areas of life are important. It reassures us not everything is changing.

Also, children often struggle with continued intensity of emotions; they need a relief. Returning to daily

SAMANTHA GARNER Sam is a renowned speaker and trainer on mental health and special educational needs (SEN).

After moving from recruitment into education she specialised in SEN and mental health, working with children who had been excluded from school, and children in care before becoming selfemployed as well as publishing a book on mental health with a renowned publisher.

She trains nationally and internationally and writes regularly for workplace publications. Sam is a qualified Educational Assessor, CBT therapist, Child and Adolescent Counsellor, and PPP (Triple-P) Facilitator. Sam is also working as a coach for the renowned Leeds Beckett University on their nationally recognised School Mental Health Award, and she is a member of the Southwest branch of the Association for Child and Adolescent Mental Health.

9

activities helps provide routine and respite from intense sadness. It’s not pretending it hasn’t happened, it’s allowing us to feel normal for a time.

When deciding what to do regarding funerals, allow the person affected to make their own decisions as much as possible. Support them to say goodbye in their own way if attending a funeral isn’t appropriate or possible. They could develop their own memorial, or create a piece of art to say goodbye. They could create a memories board or box of the person which they can then access in the future. As the grief journey continues, it’s important to find ways to talk about the dead person, particularly around anniversaries, special events etc, and having a memories box can be part of that.

I’ve heard it said that the more you tell your story, the shorter it gets, particularly after difficult things have happened to us. We need to keep talking about what happened but

each time we do, something will seem less important, and we leave it out as we heal. The grief journey is like this. At the beginning emotions will be powerful and plentiful. Each time we are able to express them, and they are acknowledged, we heal a little bit.

I’m going to finish by raising two more points. Firstly, that grief doesn’t just happen after a bereavement. It can happen after any significant life change – loss

DON’T MISS THE FUTURE ISSUES OF KIDZ TO ADULTZ MAGAZINE...

of identity through school change, loss of safety following parental divorce, loss of autonomy where you lose some element of control over your life, any loss where there is significant impact.

Secondly, make sure you look after your own mental health and wellbeing as well. The better our mental health the more able we are to support others. You are allowed to grieve to. You have to go through the grief process as well. Make sure you talk about how you feel to someone, express your emotions, tell your story.

Grief is journey we will all have too through. Connection and communication make the journey a lot easier.

Grief books: • The Invisible String • The Day the Sea Went Out and Never Came Back • Always and Forever • Michael Rosen’s Sad Book • Grandad’s Island

Helpline Live chat Free legal advice service

Information / resources Facebook support group As well as being distributed at each of the Kidz to Adultz shows, you’ll find each new issue online, so you can always keep up to date with what’s new and read all the interesting articles.

Just visit...

www.kidzexhibitions.co.uk 10

We are here to support family and carers of seriously ill children and young adults 0808 8088 100 helpline@togetherforshortlives.org.uk www.togetherforshortlives.org.uk

NEW! COMPLETE CARE COT PACKAGES – in stock and ready for delivery in 2 weeks

STAND C8

Avoid delays due to supply chain issues, our ready-made solutions are ready to support families and OTs faster than any other supplier

Package one: £5995

Package two: £7995

• 60cm high doors on one side

• 98cm high doors on one side

• W14 mattress – 90 x 170cm

• W14 mattress – 90 x 200cm

• KR3 – height adjustable and profiling platform

• KR3 – height adjustable and profiling platform

• Full height padding in Chieftain Koala with 2 clear soft windows (door 1 and door 4)

• Full height padding in Chieftain Dune with 2 clear soft windows (door 1 and door 4)

Padded Mascot Cot Bed

Padded Mascot Cot Bed

Padding colour

Padding colour KR3 sleeping platform

W14 mattress

Plus! Unlimited, free of charge bed moves – FOR ALL NEW COT BEDS PURCHASES IN 2022.

Helping families seeking respite care and professionals looking to maximise budgets

40

TH

ISO 9001

BS OHSAS 18001:2007

Trading name of SN Registrars (Holdings) Ltd

8327

ANNIVERSARY

Freephone now for fast-track cot delivery: 0800 834654 CLICK TO EMAIL US

YOUR INDEPENDENCE, OUR COMMITMENT

Theraposture Limited, Kingdom Avenue, Northacre Industrial Park, Westbury, Wiltshire. BA13 4WE. Open: Monday – Friday, 8:30am–5:30pm. Answerphone messages can be left at all other times.

Proud to work with:

www.theraposture.co.uk

PRODUCT AWARDS

WINNER OF EXCELLENCE IN CARING

11

A VITAL YEAR OF

g n i n g i a p m a c

THE DISABLED CHILDREN’S PARTNERSHIP (DCP) IS A COALITION OF MORE 100 ORGANISATIONS WHO HAVE COME TOGETHER TO CAMPAIGN FOR BETTER HEALTH AND SOCIAL CARE SUPPORT FOR DISABLED CHILDREN AND THEIR FAMILIES. DCP CAMPAIGN MANAGER, STEPHEN KINGDOM, REFLECTS ON SOME SUCCESS FOR THE CAMPAIGN AND PRIORITIES FOR 2022.

F

irst, the good news. On 1 February, the government announced a £30 million fund to provide more short breaks for families with disabled children, alongside £18 million to expand the supported internships programme.

We have been campaigning for dedicated funding for disabled children’s social care for years, with the support of a wide network of big and small organisations, thousands of parents, young people and allies, parliamentarians, newspapers and more. The additional funding shows that this campaigning has been heard. It is the result of thousands of parents emailing their MPs and signing petitions; brave parents and young people speaking at events; and hundreds of parent carers filling out our surveys. It’s so encouraging to see all this effort bearing fruit – and a massive personal thank you from me to everyone involved.

12

But, welcome that the announcement is, it cannot possibly solve all the problems that families face. Our research over the past two years have shown the devastating impact of the pandemic on disabled children and their families. And in the autumn, working with Scope, we published an updated analysis of the funding gap for disabled children’s health and social care – which showed that even before the pandemic it had grown to £2.1 billion. In that context, £30 million may look something of a drop in the ocean. However, it is the first new dedicated funding for disabled children’s social care for a decade, and – crucially – if its use is properly evaluated it should help strengthen the case for more money from the Treasury in future spending reviews.

Families can’t wait years for more support, though. For that reason, we have turned our attention from central government to local councils,

as they are deep in the process of deciding their budgets for 202223. In January, we launched a new campaign – “Count Disabled Children In”.

We are asking parent carers, professionals, and allies and wants to stand up to social injustice to take our quick and easy online action to email their local council leader, ahead of when local councils set their budgets in Spring 2022. At the time of writing, already more than 1,000 people have written to their council leaders, and you can easily join them by taking the action at the website here.

Please join us, and call on your local council to #CountDisabledChildrenIn. We’ve also produced a wealth of material to help parents and allies campaign in their local area, including local data on things such as cuts to spending and delays to assessments, which you can find at the website here.

Of course, money is only part of the

answer. We are all waiting impatiently for the government to tell us how it plans to address the failures in the system with the long awaited conclusion to its SEND review. We now expect the government to publish a Green Paper (a consultation document) on the review in March this year. We will be looking very carefully at what they have to say – and we will be campaigning to make sure government hears what parents think about it.

You can follow the Disabled Children’s Partnership on Twitter at @DCPCampaign, or on Instagram and Facebook at @DisabledChildrensPartnership.

Visit their website at www. disabledchildrenspartnership.org. uk for more information on their research, and other campaigns.

AWARD WINNING

• Recommend by Healthcare Professionals • At Home (long term solution) • At Respite (when required) • Fits to all domestic beds • Fits to all Hi/Lo Care beds • On a mattress on the floor • Lightweight – take anywhere • Machine washable • Fits to 200x90cm single bed • Fits to 190x90cm single bed • Fits to 180x90cm single bed

Ideal Long Term Sleeping Solution The Cloud Cuddle is a multi award winning - CE Marked - class 1 medical device. It’s tough, robust and durable and in just 5 minutes it can be fitted to any single bed to create a safe and calming place for a child to sleep and relax.

Huge cost saving compared to care cots & soft surround bed options.

Home assessments throughout the UK are available.

SpaceSaverBeds Tel: 01905 347538 info@spacesaverbeds.co.uk www.spacesaverbeds.co.uk 13

Autism Therapy

REVERSE WHITE

CONFERENCE 2022 Join us on the 1st April 2022 at Haydock Park for an exploration of current thinking about therapy practices and methods in autism.

Listen to the Latest Thinking from our Keynote Speakers: • Susan Allen - Lecturer & PhD Candidate, Sensory Integration Specialist • Dr Jill Bradshaw - National Clinical Adviser, Royal College of Speech & Language Therapists

Guest interview with Dr Temple Grandin

• Biza Stenfert Kroese - BSc, MSc, PhD Senior Researcher in Clinical Psychology Take Part in Workshops including: • Makaton Signing • Equine Assisted Occupational Therapy Font: All Round Gothic

c 2 m 97 y5 k0 R 227G13 B125 Hex: #e30d7d

Venue: Haydock Park Racecourse

c 78 m 30 y0 k0 R 23G144 B208 Hex: #1790d0

Date: Friday 1st April 2022

c 47 m 3 y94 k0 R 157 G193 B49 Hex: #9dc131 c 40 m 0 y0 k100 R 5 G23 B29 Hex: #05171d

Register Now: enquiries@sundialtherapy.co.uk 449 Wargrave Road Newton-le-Willows Merseyside WA12 8RS E: enquiries@sundialtherapy.co.uk T: 01925 224899

Sundial are a specialised autism therapy, assessment and intervention centre based at Wargrave House School & College, for children and young adults from all over the northwest region.

Enabled2Parent

PROVIDING SUPPORT FOR DISABLED PARENTS

& THOSE WITH ADDITIONAL SUPPORT NEEDS ENABLED2PARENT IS A NATIONAL CHARITY FOUNDED BY SARAH FAY. SARAH IS A DISABLED PARENT AND AN OCCUPATIONAL THERAPIST (OT) AND RECOGNISED THE NEED TO FORM AN ORGANISATION WHEN SHE BECAME A DISABLED PARENT IN 2017 AFTER THE BIRTH OF HER DAUGHTER. IT BECAME CLEAR TO SARAH THAT THERE WAS GREATER EMPHASIS ABOUT PARENTING CAPACITY WITHIN THE SERVICES THAT SUPPORTED HER, BUT VERY LITTLE AWARENESS ABOUT THE POSSIBILITIES AND OUTCOMES OF ADAPTIVE PARENTING.

15

A

s an occupational therapist, Sarah realised that she was trained and equipped to address and explore how the use of equipment, problem solving, and analysis of the activities and tasks of parenting could empower disabled parents like her to parent and care for their children safely and as independently as possible.

Her background in paediatrics also meant she had prior knowledge about supporting children and their families.

Through the charity, there is a platform to give disabled parents a place, a voice, and a space to belong.

Also, to give them the opportunity to access tailored assessments, advocacy, advice, information, and personalised support against a landscape of encouragement, empathy and hope.

Enabled2Parent aims to achieve this by building a bridge between a disabled parent’s human right to be a parent and rear their own children and the reality of becoming and being a resilient and independent parent with the right personalized support.

Services that the charity provides with this aim in mind includes: • An email facility for parents to refer, chat and offer advice • Assessments about the impact

of a disability on a parent’s role, their needs and help map out the journey from pregnancy onwards • Help to identify and trial any equipment they might need to care for their baby or child • Support in their transition into their role as a new parent • Support in their liaison with Adult and Children’s Services Enabled2Parent is also committed to working with professionals involved in a disabled parent’s journey by: • Working with professionals to enable disabled parents to look forward to the birth of their child with hope and excitement • Providing the relevant assessments, reports and risk assessments that relate to the functional and adaptive aspects of baby care and parenting • Supporting clients and families to understand the roles of different services and organisations involved with the family and help them form meaningful and positive relationships with their children.

• Providing education and training courses and service development workshops about

adaptive parenting that are tailor made to suit a service, organization, or business.

• Forming partnerships with existing services to provide a need led, coordinated and prompt response to parents with additional support needs Enabled2Parent currently conducts its assessments online. The charity has a growing community of parents and organisations that are Facebook followers. In addition, the network of peer support for parents, where they are linked with other parents with similar needs and stage of parenting continues to increase.

Enabled2Parent works with parents and their families at any stage of their parenting journey. Parents and professionals can refer into the service at any time and return as and when new challenges arise.

CASE STUDY 1 An expectant mother with cerebral palsy that affected one side of her body.

We conducted an online assessment of her functional needs in terms of the mother’s own needs and then her baby care strategies.

Completed a disability support needs assessment and risks assessment to enable the obstetric nurses to know what her additional needs would be before and after the birth of her baby.

We gave her the name of a private midwifery firm that could assist her at the birth and provide a package of care at home following the birth of her baby. We assessed her home environment and referred to her local services occupational therapy team for rails to her stairs and externally.

CASE STUDY 2 Mother with limited upper limb function and balance having difficulties caring for her son who had special needs following his operation This mum had limited upper limb function and balance and was unable to care for her son on a standard bed because she could not bend or

16

lift him safely. At the time we met her, she was staying in hospital with her son and their discharge home was imminent. We worked with her husband to produce a drawing and measurements of the bedroom at home and then liaised with the ward occupational therapist who made a request for a hospital bed that was accepted. Mother was able to come home with her son once the bed had been installed at home.

CASE STUDY 3 Father with brain injury with secondary visual impairment We received a referral from a children’s social worker who was already known to the family asking for help to get a deeper understanding of the impact of the father’s disabilities on his parenting role. He was experiencing difficulties

managing his anger at home. We assessed his abilities and difficulties and then liaised with professionals involved in his care in relation to his eyesight and his cognitive difficulties.

He was seen by a neuropsychiatrist, and we were able to get a more accurate perspective from his eye doctor about what he could see so the social workers had a better understanding of the impact of his sight on his ability to care for his children. The family were also living in very cramped conditions, so we were able to complete a welfare form and trigger a review of their banding.

This led to the provision of a new larger house for the family.

For further information email: info@enabled2parent.org www.enabled2parent.org

17

www.easylinkuk.co.uk Epilepsy & Autism Care

Visit us on Stand G4 Kidz to Adultz Middle 2022 Bedtime Seizure Movement Detection Alarms

GPS Location Tracking Fall Alarms

Daily Schedule Organiser MemRabel is a digital media player that can be used to develop daily routines, particularly useful for children with Autism or poor cognition. You can load videos, photo slideshows, and favourite music playlists.

•

Set daily times when a movie is automatically played back with Hi-Definition quality

•

Load files from a Flash Drive, PC, or transfer over the internet from your Smartphone

•

Create instructional videos for touch-tile playback

Cameras & Baby Monitors

Learn more on Stand G4 18

The Voice For Epilepsy is an organisa�on working to spread awareness and to give people afraid to speak out a voice. They proac�vely fund raise to support research in reaching a cure.

THURSDAY 17TH MARCH 2022, 9.30AM – 4.30PM

KIDZ TO ADULTZ MIDDLE

120+ exhibitors

CPD seminars Fun & features

A free exhibition for children and young people with disabilities and additional needs, and the people and professionals who support them CBS ARENA (PREVIOUSLY RICOH ARENA), COVENTRY www.kidzexhibitions.com Part of Disabled Living 19

Kidz to Adultz Middle

Seminar Timetable Room 1

10.30am

Autism Acceptance, Gaslighting and Thriving as a Disabled Women

World awarded, Autistic and disabled insights, an in-depth personal account of thriving as an autistic and disabled person Joely Williams - AspergerWorld. Author and awarded Autism Advocate. multiple world/national awards for speeches and associated advocacy - Stand Number V14

11.30am

Night Time Positioning for Children with Complex Disabilities: Clinical Reasoning, Application and Evidence for Sleep Systems

This seminar covers sleep systems and the clinical reasoning, evidence and potential benefits for children with complex disability Kieran Murphy, Clinical Partnerships Manager, Jiraffe - Stand Number E16

1.00pm

Top Tips for Toilet Training

This session is designed to help families and professionals know when and how to start working on the skills needed for children to successfully toilet train Davina Richardson - RGN/RSCN, BSc (Hons), Specialist children's continence nurse.

Bladder & Bowel UK - Stand Number E1

2.00pm

Introduction to Independent Travel Training

The seminar outlines the benefits that students with special education needs can gain through travelling independently Georgia Fussell, Travel Options Assessment Officer. Solihull Metropolitan Borough Council - Stand number G6

3.00pm

EHCPs and the Special Educational Needs and Disability Tribunal

We will be covering the Education, Health and Care Plan procedure, and appeals, covering the basics for those who are new to the system and advice for those who are more experienced in this area Emma Davies, Chartered Legal Executive and Senior Associate (Public Law), Simpson Millar LLP 20

Kidz to Adultz Middle

Seminar Timetable Room 2

10.30am

Managing bathing posture to support engagement and safety

This session looks to consider the theory behind bathing posture, linked to functional engagement, safety and long-term health and well-being.

Adam Ferry, Occupational Therapist and OT Service Director -Abacus Specialist Bathroom Solutions - Stand number E10

11.30am

Learning to Drive - How to get started

The seminar will provide information on the steps to becoming a full licence holder, Driving Mobility assessment centres, vehicle adaptations and leasing through the Motability scheme Mary Yates, Occupational Therapist, Driving Mobility/Regional Driving Assessment Centre - Stand number B20

1.00pm

The Sex Factor (Relationship & Sex Education training)

We have created a user-friendly toolkit consisting of training sessions and resources for teachers and staff to deliver quality RSE for children and young people with complex neurodisabilities Paula Marten, Assistant Head, Chailey Heritage Foundation

2.00pm

Supporting Children & Young Adults With Property and Financial Deputyships

Our experts will talk through how a family member or a professional may wish to become a Deputy to help manage Property and Financial Affairs, including capacity Gemma Eason, Senior Associate, Irwin Mitchell - Stand Number F14

3.00pm

Improving outcomes for positioning and repositioning in bed

We will consider different types of users whether their needs are simple or complex, physical, or sensory and show techniques for repositioning and positioning in bed.

Mahesh Shenoy, Area Sales Manager & Immedia Business Development. Etac - Stand number F10 21

KIDZ TO ADULTZ UPCOMING EVENTS e m n a c 2022 S KIDZ TO ADULTZ SOUTH Farnborough International Exhibition & Conference Centre, Farnborough

KIDZ TO ADULTZ WALES & WEST The International Convention Centre (ICC), Newport

KIDZ TO ADULTZ SCOTLAND Royal Highland Centre, Edinburgh

KIDZ TO ADULTZ NORTH New venue! Manchester Central, Manchester

KIDZ TO ADULTZ MIDDLE CBS Arena (Previously Ricoh Arena), Coventry 22

17

th

May 2022

7

th

8

th

July 2022

September 2022

1

st

November 2022

16

th

March 2023

23

CELEBRATING

65 years

OF PHAB

CLUBS AND HOLIDAYS – IT’S ALL ABOUT “MAKING MORE OF LIFE TOGETHER” WITH PHAB!

B

ack in 1957, Phab’s first inclusive holiday saw a group of young people – both disabled and non-disabled – enjoy a memorable weekend of fully inclusive games and activities in the New Forest. Every year since, Phab has been “making more of life together” for all ages.

Phab supports over 125 groups across England and Wales where members of all ages experience a

24

wide range of social, sporting, and cultural activities carefully organised for every member to enjoy. Venues are diverse – from community centres and halls to schools and universities.

In Spring 2020, lockdown and shielding inevitably meant that Phab Clubs were no longer able to welcome members to the usual venues and activities. However, we quickly embraced the technology on

offer to keep the Phab community well connected and supported, and Clubs offered virtual quiz nights, discos, craft workshops, exercise classes and talent shows – a whole diary of virtual events which in fact brought even more of our Phab clubs together. All of this was invaluable to everyone involved and has enabled friendships to keep flourishing.

We celebrated our annual Phab Awards in December 2020 and 2021 with virtual broadcasts highlighting clubs and nominees and enabling the events to be shared by everyone in the Phab community and beyond.

But we are so very much looking forward to being together in person and enjoying activities and events regionally and nationally.

Now Phab Clubs are re-opening and are welcoming both existing and new members and importantly, those who would enjoy taking an active role in the many tasks associated with running a vibrant and inclusive group. From Durham to Devizes, Chester to Chelmsford there is a warm welcome and a place for everyone at Phab.

Phab’s holiday projects started with the first group in 1957 and except for 2020 have been organised every year since then.

We were delighted that our 2021 holidays were able to take place and were enjoyed by over two hundred participants. After many months of rigorous planning to ensure the safety of all, the first guests were welcomed in early July and a fabulous succession of week-long and weekend holidays were held in the Lake District until late October.

We enjoyed some wonderful days sailing on Windermere, canoeing on the River Leven, caving in the Yorkshire Dales, rock climbing, abseiling, archery, zip wire, sensory swing, film nights, discos, farm visits, bush craft, campfires, crazy golf, and many visits to the ice-cream shop!

All this and more will be on offer this year during seven different week or weekend breaks at Bendrigg Lodge in the Lake District as well as our fully accessible caravan in Weymouth which is available for weekly rental by families and small groups.

The last two years have been a

“At Phab we recognise that we’re all different and that’s great! At Phab clubs and on projects we create a space where people feel safe, equal, and valued, and feel free to be themselves and have fun. It has been a particularly difficult time for so many disabled young people and we are committed to reducing social isolation and creating opportunities for everyone to follow their dream with no limitations!”

JULIA GILES MBE PHAB CHAIR

steep learning curve, and, like many other charities, our fundraising income has taken a huge hit. But we are adapting our holidays and our Phab Clubs’ activities to meet the new challenges and we are looking forward to the year ahead with enthusiasm and optimism. We know there is a huge need for the inclusivity which Phab offers, and we are here to do just that, together with our already established values of support, friendship, and most of all FUN!

COME AND MEET US ON STAND V21 AT KIDZ TO ADULTZ SOUTH ON TUESDAY 17TH MAY 2022, FARNBOROUGH INTERNATIONAL EXHIBITION & CONFERENCE CENTRE

25

ACCESSORIES TO SUPPORT

toilet training

DAVINA RICHARDSON, CHILDREN’S SPECIALIST NURSE FROM CHARITABLE SERVICE BLADDER & BOWEL UK OFFERS A LIFELINE TO PARENTS WHO ARE FINDING TOILET TRAINING CHALLENGING. SHE DISCUSSES WHICH EQUIPMENT MIGHT BE MOST APPROPRIATE FOR A CHILD OR YOUNG PERSON ON THEIR TOILET TRAINING JOURNEY.

S

o much about childcare has changed in a relatively short space of time, including how families are advised to approach toilet training. Toilet training is a key developmental skill addressing how and when children learn to pass urine and open their bowels in an appropriate place. Within a couple of generations, the age at which training begins has increased.

26

In the 1960s most children were toilet trained between the ages of 18 – 24 months. Now it is not unusual for children with typical development to still be in nappies at three or four years old. It is often assumed that children with additional needs will not be able to learn the necessary skills until they are much older than this. Therefore, their families are often advised to wait to start the

process until their child is much older, in the mistaken belief it will get easier if delayed.

There is evidence that having a child who has not attained continence is stressful for families and can have negative impacts for the child. It can result in difficulties finding suitable changing facilities when out and about, in social isolation and for some children will

impact on self-esteem. However, although support for delay in other developmental skills is offered promptly, when it comes to toileting too many families are still advised to wait until other issues have been addressed, or until the child appears ready to use the potty or toilet.

Postponing working on the skills needed for toilet training may have a significant impact on how long it takes be successful. This is because the child is being taught to use a nappy for much longer and many struggle to change an established routine, particularly if they have difficulties in this area or sensory processing issues or learning disabilities. Furthermore, bladder problems or issues such as constipation can be missed.

The current advice is to start working on the skills for toilet training as soon as the family are able – the earlier the better, although it is never too late to start.

Experience with children with Down syndrome has shown that with the right approach most are able to learn to wait to be put on the potty to open their bowels by the time they are 1214 months old and can be clean and dry to start school.

One of the key skills for toilet training is learning to sit in the right place. The child or young person needs to be relaxed and to sit for long enough to complete a bladder or bowel emptying. Therefore, one

of the earliest considerations in a family’s toilet training journey is deciding what equipment will be most appropriate for their child or young person.

Sitting on the potty results in the child being in the best position for bladder and bowel emptying having a well-supported bottom, feet flat on a firm surface and knees higher than the hips. This position helps to relax the pelvic floor, but also straightens out the bends at the end of the bowel, which helps with complete emptying of the rectum (the rectum is the portion of the bowel nearest the bottom). Correct positioning is therefore useful in prevention of constipation, as well as being part of its treatment.

While a potty may be most appropriate for smaller children, if

there is poor sitting balance, a potty with a raised back or a potty chair designed with additional support may be required. For children who want to imitate other family members a potty that looks like a miniature toilet is an option. For trips away from home a travel potty may be the simplest solution, with many available to purchase online.

Older children and those with processing differences may be better going straight to a toilet. The size of the toilet may be more appropriate for the older child and there will be no need for them to learn a new routine around where to toilet when they grow, or for other venues such as school, on holidays or staying with family or respite carers. However, the toilet can cause anxiety for many children. They are not used to sitting on a seat with a hole under their bottom and may feel worried about falling in. The family toilet may feel very high and insecure, and it is difficult to fully relax and empty the bladder and/or bowel if the individual is tense.

Most children and young people will need an insert seat and appropriate height of step to ensure that their bottom is well supported, and feet are flat on a surface high enough to allow their knees to be above their hips. Some reducer seats have integral steps with height adjustments. Folding seat reducers with a separate step may provide a simple solution when out and about.

Children and young people who

27

are working on the skills for toilet training, but have balance or sensory issues, will also benefit from having something to hold onto or to support them. Some insert seats have handles, or handles can be fixed to a wall, if there is one adjacent to the toilet. Toilet frames and moulded toilet seats, which fit around or over the existing toilet are also available to meet a variety of seating needs.

Different mobility needs should not, of themselves, restrict a child’s ability to toilet train. There are several products available to assist where access to the toilet or potty is difficult. These include urinals, with a wide variety available for both boys and for girls. Specialist granules can be used to convert the urine into a gel that can be flushed down the toilet if spills or splashes are a concern.

‘Accidents’ are part of learning a new skill and it can be helpful to think about how to manage these at

28

early on. Using nappies, pull ups or other continence pads help to keep the individual feeling dry and warm.

Therefore, they can be unhelpful if they cause confusion for the child or young person about what is expected.

They may use these rather than trying to get to the toilet or potty, or they may not notice when they do not make it to the correct place.

Washable pants, with extra absorbency, allow the child to feel wet, which is an important part of the training process, but they will hold most of the leakage, so protecting outer clothes, furniture, and carpets.

Other options include washable or disposable continence mats, which will protect car seats, chairs, and mattresses. All of these are widely available.

For more information about how to approach toilet training visit the Bladder & Bowel UK website here.

Support should also be available

from your child’s healthcare professional (health visitor, school nurse or specialist nurse). If your child has physical disabilities or sensory issues then ask if their occupational therapist can do an assessment of their toileting needs.

The occupational therapist should be able to suggest suitable equipment to meet your child’s needs.

SUPPLIERS YOU CAN TRUST

PRODUCTS AND SERVICES FOR INDEPENDENT LIVING

CONTINENCE PRODUCTS EQUIPMENT TRAVEL FUNDING MOBILITY SERVICES AND MUCH MORE

am onwards at the pplierdirectory.

JOIN US w w w . s u10Quadrangle.

EVERY DAY disabledliving.co.uk For a full schedule of activites, THIS WEEK visit www.reallygreatsite.com

29

LONG COVID KIDS:

the road so far

LONG COVID KIDS WAS ESTABLISHED IN 2021 TO RESPOND TO THE URGENT NEED OF SUPPORT FOR FAMILIES AND CHILDREN FACING THIS NEW PHENOMENON – AND FEELINGS OF ISOLATION AND A LACK OF UNDERSTANDING. HERE, SAMMIE MCFARLAND TELLS US ABOUT THE ORGANISATION. 30

F

irst, it was said “children don’t get Covid-19.” Then, “they don’t transmit it.” Shortly after this it was understood “they don’t get seriously ill’’ or “they rarely get long Covid.” Unfortunately, children are affected by all of these things. We now understand that long Covid is a vascular condition and can affect any part of the body, while much-needed research is ongoing.

Unprecedented levels of Covid infection in children caused a 52% increase in long Covid in November 2021, and the December figures remained at the same high level.

The Office of National Statistics reported (published 4th Feb 2022) that 20,000 children have been ill for over a year and 117,000 for at least four weeks. In addition, nearly 3,800 children were recorded as Covid hospital admissions in January, with a further 1,125 already in February (as at 13th Feb), the eighth month of over 1,000 admissions in a row.

The numbers of hospitalised children that go on to develop long Covid are unknown. Research reports have suggested that between 2% and 10% of Covid infections may suffer ongoing symptoms.

In 2021 Long Covid Kids became the first UK-based, international charity for families, children and young people living with long Covid.

The charity focuses on awareness, support, research and action and has already received recognition from the NHS and and the Centre for Disease Control in the USA, as well as being a recommended public resource in the new NICE long Covid guidelines.

Long Covid Kids started as a grassroots organisation run by people living with long Covid. It began with a short film aimed at raising awareness of the long-lasting symptoms of Covid in children. It continues to organically evolve to accommodate growing demand with a tireless campaign for recognition, support. and recovery.

Beloved children’s author Michael Rosen is the perfect patron for us.

Having lived through a turbulent hospital stay himself, and currently living with long Covid, he is a

compelling advocate for those children and young people also living with long Covid.

WHAT IS LONG COVID? Long Covid is the term given to the ongoing signs and symptoms caused

by SARS-CoV-2 infection that remain unresolved for 4 weeks or longer.

The term ‘long Covid’ was coined by patients who challenged the early Covid guidelines that stated people recovered from mild cases within two weeks. It known by other names internationally, such as PostCovid-19 and Post-Acute Sequelae of SARS-CoV-2 Infection (PASC).

Long Covid was first recognised by patients at the beginning of the pandemic when they noticed that symptoms such as pneumonia and chilblain like sores which were not resolving with time. This history has been peer-reviewed and published.

WHAT ARE THE SIGNS OF LONG COVID IN CHILDREN?

Covid-19 is not always a benign illness in children and as yet we can’t accurately predict who will experience long Covid.

CASE STUDIES

KITTY AND SAMMIE Sammie and her now 16-year-old daughter Kitty caught Covid-19 in the first wave of March 2020 when patients were unable to access hospital care unless conditions were life-threatening. Predominantly unable to get out of bed for eight months, they struggled on their own to wash, dress and perform basic tasks. Sammie’s husband became their carer. A year and a half on, Kitty’s school attendance has dropped to 47%. She attends part of each day depending on energy levels and is understandably anxious about how much impact this will have on taking GSCEs next year.

In the first year following infection, Kitty’s main symptoms were heart palpitations, insomnia, dizziness,

The signs and symptoms in children and young people are numerous.

They are often fluctuating in nature and can appear after a delayed onset. Symptoms more often appear in constellations but can appear in isolation. For all these reasons, diagnosis can be challenging, and especially so for those who were untested during the acute infection.

Symptoms range from fatigue and brain fog to breathlessness, unusual and fast heart rates and rashes, to loss of mobility, insomnia, anosmia, organ damage and acute onset neuropsychiatric symptoms consistent with Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS).

31

weakness, muscle twitches, temperature dysregulation, fatigue, brain fog and undiagnosed abdominal pain.

23 months on, Kitty has a clinical diagnosis of long Covid. The fatigue, brain fog and abdominal pain impact everyday life and Kitty has not been able to return to her usual activities.

Day to day involves managing symptoms, pacing, exercise-based therapy and nutritional intervention.

The combination of daily pain, ongoing symptom management and the change in circumstances, combined with little medical support and minimisation in the media, has had a significant knock-on effect on her emotional wellbeing. Kitty is unable to attend school on a regular basis and now has a home tutor to support her in the lead up to her exams.

ANNA AND HELEN Helen’s daughter Anna was also infected with Covid in the first wave and is now nine years old. Anna was previously a happy, energetic little girl who loved ponies. Like Kitty, she

32

had no underlying health conditions.

Since contracting Covid-19 Anna has become verbally and physically aggressive and refuses to eat certain foods or get in the bath. Anna has finally been given diagnoses of long Covid and Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS) triggered by Covid infection. Both of these diagnoses are complex in their presentation.

Helen has had to become a strong advocate for her daughter while managing her own long Covid, and like Sammie has had frustrating healthcare experiences. She continues to face disbelief about her daughter’s mental health challenges, fuelled by the media narrative that children’s mental health issues have been caused by lockdown. As a result of this disbelief, Helen turned to a private healthcare provider to procure the medication Anna needed to help stabilise her health.

Anna has since had a second Covid infection, and due to pain and weakness in her legs, now requires the use of a wheelchair and physiotherapy treatment.

HOW WE ARE ADDRESSING THE PROBLEM While delivering Long Covid Kids’ services, the organisation has identified that one of the main challenges for families is being told that long Covid is new, and that professionals don’t know how to help yet. The lack of adequate resources is often a barrier to ongoing care and support, with parents often stuck in medical isolation. In desperation, they often turn to the internet. As with any illness, the information found online varies in accuracy and validity.

This is where Long Covid Kids can support and guide. Our team of volunteers are ‘experts by experience’ and offer support to families, signposting to credible resources and services, as well as sharing a broad range of experiences and what they have found helpful.

The small Long Covid Kids team has worked tirelessly throughout the pandemic to make sure children have a voice. Being forthright despite their

own illnesses and life challenges in negotiating with those setting up NHS services, they have fought to co-produce and disseminate quality research, and providing comment on the many reports which we feel are misrepresentative.

Importantly the team speak up for all the families and children who feel dismissed. Many of these people feel silenced and even gaslighted as their experiences are seen to be at odds with what is currently empirically understood.

Covid-19 remains a challenging phenomenon, and long Covid in particular is difficult to assess and measure. This has led to suggestions from some quarters that long Covid is a purely a mental health issue.

Long Covid Kids has a wide breadth of understanding having observed members of the support group, now seven thousand strong. We have also listened to existing communities living with chronic health and have always advocated for a cautious approach to recovery.

“Cautious Tortoise” is an easy to follow flow chart that embodies all that we have learnt, and was developed by Long Covid Kids founder Sammie McFarland and occupational therapist Kirsty Stanley to provide a much-needed framework to guide families in their approach towards recovery.

It has been well received and is supported by Long Covid Physio, an international peer support, education and advocacy, patientled association of Physiotherapists (Physical Therapists) living with Long Covid and allies.

The Long Covid Kids team actively supports schools to help children access education alongside managing their health needs.

Having worked to ensure long Covid is acknowledged and accepted in children, the team recently released the Pacing Penguins resource, comprising a poster to support children and young people to recognise how to manage their ongoing symptoms day to day through pacing.

The next challenge the team faces

is fundraising. We know how to support this growing community of children, young people and families but we need the funds to achieve it. Sadly, due to the toll that the pandemic has had on our public services, there is an ongoing shortage of volunteers, energy, expertise and funds.

Long Covid Kids has achieved such a lot in the past 18 months. Since becoming a charity we hope to be able to secure funding to extend our services. Due to the ongoing

pandemic and unprecedented level of infection in children, we sadly anticipate a tsunami of new members requiring support and signposting. http://www.longcovidkids.org

33

DEVELOPING

Snoozzzy

SLEEP DEPRAVATION CAN HAVE A HUGE IMPACT ON ALL THE FAMILY. LOUISE LILOF FOUNDER OF THE SNOOZZZY RANGE OF WEIGHTED BLANKETS TELLS US WHAT INSPIRED HER TO TAKE THE LEAP INTO THE WORLD OF AN ENTREPRENEUR.

A

s a new mum of two girls who are very close in age, I quickly realised that my own sleep would become something that was a bit of a luxury. Thankfully my eldest, Isabel, quickly fell into a nice sleep routine which was more than manageable but her younger sister, Florence, was a different story!

As she got older Florence would wake roughly four or five times a night for no other reason than

34

wanting a cuddle before drifting back off to sleep again. As I am sure you can imagine this was a bit of a killer, especially when combined with a toddler who didn’t often sleep in and working full time, and so I decided to see what was available on the market that might help her.

That is when I came across weighted blankets and their potential benefits to aid a full night’s sleep.

However, all the options on the

market were very clinical looking, they were all dark grey or blue, with mixed reviews on the distribution of weight and ease of cleaningwhich is obviously a must when thinking about any product for a child! I set to work researching all the pros and cons of the designs and options that were available and put together a list of things I liked and what I would change – and so the idea for Snoozzzy was born.

I was very fortunate that my role at the time was for a small network running an ecommerce site so I had a number of contacts I could utilise for their expertise when it came to sourcing suppliers and manufacturers. Also, my boss could see the potential in both myself and the product and so was happy to invest in the plan to give the idea a kick start. Once Florence had been sleeping with her blanket for about one week she was sleeping through every single night. I was like a new woman!

When developing the Snoozzzy weighted blankets I tried to keep my ‘mum brain’ on and Florence in mind- it had to be something she would want to use and that would also be easy for me to incorporate into our bedtime routine. The first thing I decided was that all the options I would provide would come with a removable, machine washable, soft, and cuddly cover which would be covered with a fun print that a child would want to be theirs. The weighted part of the set was also to be sewn into small squares which would hold the beads in place so the weight was always evenly distributed and where it needed to be all night long. Because I know what children can be like I decided to spend some of the investment on strength testing all the stitching to make sure everything was as strong and safe as possible as no one wants to wake up to a bed full of tiny beads.

Since the full launch of the product and the brand I have been very conscious to listen to the feedback of my customers and some small changes have been made along the way. For example, labels were moved as they were upsetting to some children with sensory needs also the range of cover designs has been extended and is something I

am always working on and next hope to launch a cotton set.

I have also branched out into the smaller, more mobile weighted lap pads.

As I launched the business with the importance of sleep in my mind it has been truly overwhelming to learn all the other areas that a weighted blanket can help. I have had amazing feedback from customers who have found the blankets a great help when it comes to Tourette’s, juvenile arthritis, autism, restless leg syndrome, ADHD, sensory processing disorder, anxiety – the list seems endless.

You can find Snoozzzy blankets at www.snoozzzy.co.uk

35

Nerve Tumours UK SUPPORTING PEOPLE WITH NEUROFIBROMATOSIS

NEUROFIBROMATOSIS IS A LITTLE-UNDERSTOOD CONDITION AFFECTING OVER 26,500 PEOPLE IN THE UK. MARKUS BELL FROM NERVE TUMOURS UK TELLS US MORE ABOUT THE CONDITION, AND THE WORK THE CHARITY IS DOING TO RAISE AWARENESS 36

WHAT IS NEUROFIBROMATOSIS? Neurofibromatosis (NF) loosely translates to mean ‘nerve tumour increase’. It is one of the most common neuro-genetic conditions, causing tumours to grow on nerve endings and with many associated medical issues. NF is an incredibly variable condition and might vary from one person to another even within the same family. Some people may be affected very mildly and have very few health complications. Others may have many more complications, or more serious complications that can seriously impact daily life, and restrict what they can do The term NF is an umbrella term for three conditions: Neurofibromatosis Type 1, Neurofibromatosis Type 2, and Schwannomatosis.

People diagnosed with NF are both vulnerable and often isolated.

Most GPs will have only a handful of patients on their list, so their experience is likely to be limited, and non-medical professionals may have little or no knowledge of the condition. Out of this need for better understanding the charity Nerve Tumours UK was formed 40 years ago by a group of parents, each having a child diagnosed with neurofibromatosis.

WHAT TO DO NERVE TUMOURS UK DO? A predominantly community-based service, comprised of regional Specialist NF Nurses and Advisors, a national helpline and much more, Nerve Tumours UK funds a unique specialist support network for the 26,500 plus children and adults diagnosed with NF. The charity offers both medical and non-medical advice and support, in a variety of environments to help suit the complex needs of people with this varied condition. The services support the affected individual and its family from first diagnosis to education and transition into the workspace.

Over 60% of patients will

ELLA AND HER BLOG One such person is Ella, a teen with Neurofibromatosis Type 1. She writes a blog with regular updates documenting her experiences of living with the condition in order to help other people that are going through something similar. She hopes that: “By sharing not just the bad things but the good ones too, I might help those young people to feel they are not alone and stress that these issues are totally normal for any teen.”

You can read all about her experience with the Nerve Tumour UK charity, as well as her ongoing academic journey to university during the coronavirus pandemic at the website here. have learning disabilities, yet support is often non-existent or inappropriate, which can make the child’s experience at school difficult and unproductive. Therefore, one of the main services offered by Nerve Tumours UK is a Schools Advisory Service for teachers and parents of children with NF, who are experiencing difficulties at school.

Likewise, in the workplace, we offer an advisory service for employers, who will not have heard of Neurofibromatosis, and will not be aware of how the condition may affect an individual. We can host training sessions for HR and senior managers.

Adults may also need help with information on benefits, how the benefit system can help them, and how to access and apply for such information and support.

The Board of Trustees continues its links directly to the membership base, as it is partly composed of people with the condition, those with a family member diagnosed with NF, and by medics specialising in NF. The core aims of the charity were, and still are, driven by the needs of the NF community, particularly and

primarily for those diagnosed with the condition, but now also from the needs of the medical profession, who we also advise and support.

We are overseen by a Medical Advisory Board (MAB), comprising fourteen leading experts in the NF field, and chaired by the leading expert in Europe, who is also named in the top two in the world. Steered by the MAB, our service continues to meet the communities ongoing needs as well as embrace new initiatives and ideas as medicine and research progresses. Our services are consistently evaluated through patient feedback, consultation with medical professionals including the four English Specialist Centres for NF. The Nerve Tumour website shares the personal stories of many different people affected by NF, all at different points in their journey.

Nerve Tumours UK info@nervetumours.org.uk 020 8439 1234 https://nervetumours.org.uk Social icon

Circle Only use blue and/or white.

For more details check out our Brand Guidelines.

37

Rhywun ar dy ochr di Someone on your side Llinell gymorth gwybodaeth, cyngor ac eiriolaeth i blant a phobl ifanc yng Nghymru Information, advice and advocacy helpline for children and young people in Wales

am ddim / cyfrinachol / i ti / 0-25 /meic.cymru 38

@meiccymru

@meiccymru

Snowdon Masters Scholarships 2022 NOW OPEN! Closing Date: 1st April 2022

#SnowdonScholarship2022 @GDIHub @SnowdonTrust

Are you a disabled student who is ambitious, talented and driven to affect change? Then this scholarship might be for you!

Whats available?

Up to £30,000 non-repayable funding available per student Who can apply?

Disabled students looking to do any master's course at a UK University starting in 2022/2023 Interested?

Find out more and apply: https://www.disabilityinnovation.com/projects/snowdon -masters-scholarships 39

Disabled

LIVING

THIS IS WHO WE ARE AND WHAT WE DO….

DISABLED LIVING

A charity which provides impartial information and advice about products, equipment (assistive technology) and services for disabled children, adults, older people, carers and the professionals who support them. We have a range of services which you can access via our helpline, through the website or at our Kidz to Adultz exhibitions. www.disabledliving.co.uk

EQUIPZ

The team comprises occupational therapists, trusted assessors, moving and handling specialists, physiotherapists, nurses and continence specialists.

We respond to enquiries via our helpline and website. Some people opt to visit the Disabled Living Centre based in Manchester for a free equipment assessment.

Helpline: 0161 214 4590

BLADDER & BOWEL UK

The team provide information and advice for children, young people and adults with bladder and bowel problems. We provide a confidential helpline managed by a team of specialist nurses and knowledgeable information staff.

In addition, the website offers a wide range of downloadable free resources.

Helpline: 0161 214 4591 www.bbuk.org.uk

KIDZ TO ADULTZ EXHIBITIONS

We organise the largest FREE UK exhibitions totally dedicated to disabled children, young adults, their families, carers and the professionals who support them, with over 100 exhibitors at each event. We currently deliver five events nationally in Coventry, Farnborough, Newport, Edinburgh and Manchester. www.kidzexhibitions.co.uk

TRAINING

We run a comprehensive training programme for professionals and carers.

Most of our courses are accredited by Open Awards and others provide CPD opportunities. Our training courses can be ‘tailor made’ to suit your organisations requirements and can be delivered throughout the UK. www.disabledliving.co.uk/training