Support For Health Needs
Cerebra
Founded in 2001, Cerebra is a charity that works to improve the lives of children with neurological conditions, through research, information and direct, on-going support. Cerebra can provide families with the following:
Information and advice on a number of topics, over the phone or through our website
Face to face support through our network of Regional Officers in England and Wales who can help with form filling and letters, completion of the Disability Living Allowance form, meetings, specific local information and activities
A sleep service, covering some parts of the UK, which gives advice and support to families on a wide range of sleep issues
Grants of up to 80% of the cost of equipment and services to make life easier and more enjoyable
A free postal lending library for books and sensory equipment
A free telephone counselling service
A holiday home in Pembrokeshire, South Wales
A Wills and Trusts scheme
‘Personal Portfolios’ to help introduce children to new people they meet
An innovation centre who design bespoke equipment to meet family’s needs
A monthly e-newsletter full of informative articles and stories
Regional family support forums in England and Wales
Publications can be downloaded from the website:
Money Matters: A Guide for Parents
Finding and appraising information and evidence on the Internet
DLA Guide
Education Health and Care (EHC) Plans. (Education in England: A Guide for Parents)
Education: Statement of Special Educational Needs: A Guide for Parents
CLAPA
For parents and carers of a child with a cleft, CLAPA is a link to the rest of the UK cleft community, and the practical and emotional support we provide goes above and beyond what is available within the NHS. Our aim is to work with families and the NHS Cleft Services to give parents and families the best possible support from the moment of diagnosis. Our Parent Support Services include:
Providing specialist bottles and teats to allow parents to feed their babies. These orthodontic teats are specially developed for use by babies with a cleft, and the bottles can be gently squeezed so that babies do not have to struggle to suck the milk through. They are available in our online shop and can also be purchased over the phone
A network of intensively trained volunteers known as Parent Supporters who offer one-to-one emotional and practical support and advice to new parents
Reliable and sensitive information on all aspects of raising a child with a cleft.
Local events for families run by regional staff and CLAPA Branches
Happy Faces support groups organising regular informal meet-ups for local parents and carers
Access to our online Support Groups including our lively and active Facebook community.
Lucky Fin Project
Many children with Trisomy conditions are born with differences to their limbs. The Lucky Fin project is an American charity that has created an information and support network for families across the US and beyond. This resource was recommended to us by a Trisomy family who found their information helpful. They have a collated a great range of resources on research and resources for young people with limb differences, including links to a range of children’s books. They also work to raise awareness of limb difference, including working with a range of ambassadors who all have limb differences themselves. It is a really positive, capability focussed, look at living with these conditions.
MACS
MACS is the UK’s national charity for children born without eyes or with underdeveloped eyes. We help 1800 people across the UK, supporting them at each stage of their journey by providing peer support, practical help and opportunities to take part in life-changing activity trips. They support children and adults who have one of, or sometimes a combination of, three eye conditions: Microphthalmia, Anophthalmia and Coloboma. Microphthalmia is a common characteristic of Trisomy 13 and therefore families of children affected by the condition may find MACS support useful. They provide:
Emotional support through a helpline and Facebook support group
Financial assistance by grants or subsidising family holidays in our 3 caravans
Peer support through our national and regional social events
Confidence building for our children and young people by providing heavily subsidised activity holidays on both land and sea
Funding for research into MACS conditions
https://macs.org.uk/about-macs/about-macs-conditions/
Scope
Scope is a national charity working to ensure that disabled children and young people have the same opportunities as everyone else. Scope provides information and advice for families of:
Newly diagnosed children
Preschool children
Disabled children in the early years
Primary school children
Secondary school children
On the Scope website you can:
Join the new and improved online community
Find out what’s available in your area
Read the parents’ guides and information on specific concerns such as working with professionals, diagnosis and treatments, and money and assistance
You can also call the free confidential helpline: 0808 800 3333 (weekdays - 9am to 5pm)
Special Kids
Special Kids in the UK is a charity for families who have a child of any age with special needs. Special Kids in the UK aims to bring families together for friendship, to share information and to support one another.
Forum. The special needs support forum is open to all members, extended family members, friends and also professionals working with children who have special needs.
Member Discounts Verified Charity members are able to access member benefits (for example, discounted trips and entry to attractions around the country when attending our family days). Charity members are also able to vote on some charity decisions and help with decisions on how charity funds are used to benefit the members. There is also a private section of the support forum where charity members can make contact with each other and access all member benefits.
Annual Fun Day. From an original camp the annual ‘Speshfest’ – affectionately nicknamed by some of our children – was born. The family fun day, usually held on a Saturday in August, is a chance to relax with other families, with bouncy castles and a BBQ, with visits from the local fire brigade and entertainers and a marquee with arts and crafts inside in case of poor weather. The festivities continue into the evening, with a fun fancy dress party and a disco
Get Togethers Special Kids In The UK likes to promote get togethers to encourage parents/carers to meet others in their area so they can share experiences, knowledge and ultimately to build new friendships. Members of the charity receive a subsidy to assist with travel or the actual cost of the meet itself. Be it a Coffee at Costa, a meet in the park for a picnic, it doesn’t matter we will do what we can to encourage get togethers.
Lucy-Mai’s Marvellous Memory Making Machines will be fully adapted static caravans enabling families to take a much-needed break in an environment close to the adapted one they rely on at home. information@specialkidsintheuk.org 07526 890 790
TOFS
TOFS provides support and information for those living with Oeshophageal Atresia (OA) and Tracheo-Oesophageal Fistula (TOF). There is a helpful introductory video, advice for families and stories of families’ lived experiences. The information is informed by their medical advisors. They also have a phone line and regional support. Membership of TOFS is free and allows people to access further support and a regular magazine.
Accessing Continuing Health and Social Care
For more information about how to access support in your area, please visit this page.
Products
Project Linus UK
Project Linus UK is a volunteer organisation which provides homemade quilts, blankets and incubator covers to children in hospitals and hospices. Since 2000 our volunteers have created over 145,000 quilts.
https://projectlinusuk.org.uk/
MERU
MERU is a charity that offers an individual design and manufacturing service of disability products for young disabled people. They can make modifications to existing disability products and repair damaged equipment, as well as custom-designing and manufacturing new and complex items. MERU also runs an equipment loan service. MERU also sells a range of ready-made disability products. These are designed and manufactured inhouse by MERU engineers and volunteers in response to requests from families and therapists.
They are available to purchase from the MERU online shop and sales of these affordable solutions help support the custom-making service.
For more information contact MERU: email: info@meru.org.uk | tel: +44 (0)1372 725 203
Newlife
Newlife offers the free loan of specialist toys to families who have disabled and terminally ill children. Play Therapy Pods can be loaned for 12 weeks. There are different categories of play pods to choose from, depending on the child's age, physical and learning abilities, and medical needs. The Play Therapy Pods are self contained and are delivered direct to the family's door.
To arrange a loan complete the application form available on www.newlifecharity.co.uk
Financial Support
Charlie Cookson Foundation (CCF)
The Charlie Cookson Foundation (CCF) provides financial support to parents of seriously ill children with life limiting conditions that require 24 hour nursing care or specialist nursing facilities. We understand how difficult life can become when you have had to reduce your working hours or in fact leave your employment as your child requires 24 hour care. We will directly pay your mortgage, rent, gas, electric provide food vouchers, petrol card, basically help with your day to day living expenses. We will cover a period of three months within our one payment budget. The foundation can also continue to support families following the loss of their child.
https://thecharlieandcarterfoundation.co.uk/
Family Fund
If you are raising a child with a disability or serious health condition in the UK, you may be eligible for grant from the FAMILY FUND. For further information on eligibility criteria and what they help with please visit www.familyfund.org.uk/
React
Helping children with life-limiting illnesses, React works to give children comfort, dignity and where possible, greater independence. We supply a wide range of equipment from specialist wheelchairs, beds, baths and mobility aids, to essential everyday homecare items like pushchairs and domestic appliances. This may include educational equipment to ensure a child’s developmental needs are met; React Holidays at one of React’s mobile holiday homes; and, very sadly, funeral expenses and memorial headstones. https://reactcharity.org/
Sandcastle Trust
The Sandcastle Trust aims to provide fun and respite for families affected by rare genetic conditions. They provide grants to families for everything from day trips to a family break!
Tips to Boost your family income
The pandemic has financially impacted the majority of UK households, and with unemployment on the rise and the furlough scheme extended, making your family income stretch has never been more important.
Whatever your current situation might be, there's a lot that you can do to take control of your own finances. From getting a better understanding of your disposable income to planning fun and free days out, here are some things every family can do to make the most of their income.
How to budget family income
Your financial situation may have changed in light of recent events, but no matter how much or how little disposable income you have, there’s a few things that you could do to try to make your money go further as a family. A third of households in the UK have taken steps to cut down their household expenditure during lockdown, and all it takes is a little extra effort. Here are five tips for how to budget family income:
1. Reduce one cost from your everyday lives
If you look through your monthly outgoings, you’ll probably find something that you don’t need anymore. Whether it’s a membership for a gym you’ve not visited for a while, one too many streaming services, or a TV bundle that has add-ons that you didn’t even know about. Try to remove one (or more!) of these unnecessary things from your life, and you’ll save money on something that you might not even miss.
Try the ‘Your Bills’ section of our Compare the Market app, which can link your accounts and bills to give you greater visibility and control of your money. It also allows you to track your spending by monitoring any changes, and shows you where you can save.
2. Save on your weekly shop
Lots of supermarkets offer loyalty and reward schemes. Things like the Tesco Clubcard or Sainsbury’s Nectar Points allow you to build up rewards simply by shopping as usual and collecting them each time you shop.
Morrisons also offers their Savers Stamps scheme, which allows you to buy stamps throughout the year, which will then add up to help you budget for something like your Christmas shop, which we all know can be an expensive one!
You’d be surprised at how much you can save by planning your meals more. If you have a plan for the week, you can buy ingredients that’ll go further, rather than buying for each individual meal.
You can also get smarter on how and where you shop. Switch big names for own brands to make lots of small savings that can really add up. Meanwhile, shopping at one of the value supermarkets like Aldi and Lidl can see you make further savings.
3. Fun, but cheap days out
A great way to budget, without sacrificing days out, is to take advantage of schemes like a National Trust membership, or a Merlin Pass. After one payment, you’ll be able to make the most of dozens of fantastic venues around the country, as many times as you like. Some schemes also allow you to pay monthly, if you’d like to split up the cost.
And of course, with qualifying purchases with Compare the Market, you can make the most of our Meerkat Meals and Meerkat Movies, which allow you to enjoy great days out at Meerkat Meals rates.
Sometimes the best things in life are free, and there are loads of things to do as a family across the UK that prove just that. Take a look at Trip Advisor or Visit Britain and you’ll find lots of fun activities in your area and further afield.
For more, go to: https://www.comparethemarket.com/money/content/boost-your-family-income/
Supporting Siblings
Contact
Contact have released a helpful information pack for parents on meeting the needs of the Siblings of children with a disability or long-term health care need. It provides lots of information on common difficulties for siblings, ideas for responding to them and also information on what services and support might be available to them. It is downloadable from their website at www.contact.org.uk/media/1200148/siblings.pdf
Booking Short Breaks
Disabled Children
Disabledchildren.org.uk has been developed by the disabled children’s charity KIDS. Its aim is for parents and carers to easily book and manage short breaks for their child or young person. Your child or young person can enjoy and experience the activities that they are interested in with the support of a skilled Short Break Worker and you can take a break, confident that your child is with a trained worker. The disabledchildren.org.uk portal is simple to use, convenient and puts you in control. It doesn’t matter if you are using direct payments, personal budget, or hours assigned to you by the local authority, the portal makes it easy for you to find a worker, from different providers, in your area and to book breaks.
Helpline: 03330 142 990 Email: enquiries@disabledchildren.org.uk
Revitalise
Revitalise is a national charity providing short breaks and holidays (respite care) for disabled people and carers. There are three centres in the UK - in Southport, Southampton and Chigwell - offering a range of activities and optional excursions. Revitalise fundraises to subsidise the cost of short breaks. The charity also offers advice of local authority funding and, on a limited basis, can offer part-funding of a break through the Joan Brander Memorial Fund.
For more information about Revitalise breaks, you can call 0303 303 0145.
Accessible Information for Children
Little Parachutes
Little Parachutes provides a unique and simple way to search for picture books that address situations and issues that young children experience. When you browse the Little Parachutes library you can quickly find picture books on specific subjects. As well as general childhood topics, the library includes books on challenging situations such as bereavement, divorce and serious illness in the family. When you click the links from the Little Parachutes website to Amazon to purchase books, Amazon pays little Parachutes a referral fee. 50% of the referral fees we earn go to Winston’s Wish. All remaining fees go towards the running costs of the project.
Medikidz
Medikidz is a children’s medical education organisation that works closely with healthcare professionals, families, children and patients to produce unique learning materials in an interactive, powerfully-visual comic book format. These comics help to educate children about their health as well as the health of those around them.
The Medikidz are five energetic, larger-than-life comic book superheroes on a mission to help young people understand different illnesses and medical concepts through fun and exciting comic books
All comics have received the The Information Standard, which certifies that published content is clear, accurate, balanced, evidence-based and up-to-date.
Titles include:
Medikidz Explain Chronic Pain
Medikidz Explain Seasonal Flu
Medikidz Explain Having an Operation
Medikidz Explain the Intensive Care Unit
Medikidz Explain Fractures
Medikidz Explain the Ronald McDonald House
What?Why?
What?Why? Children in Hospital is a charity aiming to support children and young people who have to attend hospital for investigations, procedures and treatments. They develop and share video clips with age and ability appropriate information to show hospital procedures and reduce anxiety for children and parents. They have some great videos on their site, presented by children and are growing their resources constantly. They also have a range of leaflets for people who prefer to read and keep information. Not only useful for children, it can help parents who are facing their child have a procedure for the first time.
https://www.whatwhychildreninhospital.org.uk
Transition
Together for Short Lives
Thanks to medical advances, an increasing number of young people are now requiring transitional support from paediatric to adult services. There are now almost 13,000 18-25 year olds with life limiting conditions in England. In November 2018, Together for Short Lives launched their Fund for Change in transitional services. Alongside this they have produced some useful resources for families approaching transition.