Family Support

Welcome to the Family Support Coordinator (FSC) webpage. In our role, we support children, young people and their families affected by Wolfram Syndrome (WS) to ensure they feel fully supported by the healthcare and other support professionals working with them. 

How our FSCs support WS Families

At clinic

As part of our role, we help families with the specialist WS MDT clinics at Birmingham Children’s Hospital (BCH) that families attend typically every 12 – 18 months. We also help families who may be seen in at WS virtual clinic, which is generally every 12 – 24 months. We ensure families have all the information they need before attending clinic. We help families with logistical arrangements such as transport and accommodation during their time at BCH. Our goal is to ensure families have all they need to make their visit as stress free and pleasant as possible.

We personally attend each WS MDT clinic, and we are available to assist families throughout the time they are with us – the Sunday evening before clinic, at Ronald Macdonald House, on Monday and Tuesday during clinic and Monday evening if needed. We can provide both emotional and practical support such as assisting families on where to go, to attend their appointments at various departments within the hospital. The Sunday evening at Ronald Macdonald House is an opportunity for families to come together with the FSCs in an informal setting outside of clinic to ask questions and get to know other families. 

Listening to families is at the heart of what WSUK does. An important part of our role is to gather feedback from families on their experience and opinions of the WS MDT and virtual clinics to help us and the BCH team provide the very best service that meets the needs of families. From time to time, we may also ask you to complete a short feedback survey on our family support service. A summary of your feedback is provided to the BCH team as part of our ongoing contract with the hospital.

In the community

Outside the clinic, we continue to act as an advocate for families. When a new family is referred to the clinic one of us will visit them at home, wherever possible, to find out more about their situation and how we and WSUK can best support them, and to answer any questions the family may have. 

We can also help families access support locally and ensure they have access to the benefits that they’re entitled to. This can include help in securing the best support for their child at school, and ensuring the right provision is in place, or ensuring that they’re receiving all the benefits that they should be (for example universal credit, carers allowance and/or disability child premiums). We can refer/signpost families to external agencies such as SENDIASS, EHCP support, charities in their local area and sensory services. We can attend EHCP meetings and consultations with schools to help support the WS affected young person through their education. We can provide enhanced support to schools by delivering presentations that explain the challenges that WS presents to young people and individuals.

Further to both our roles in clinic and the community, we will also be available during the WSUK annual conference to meet families and answer your questions. 

For more information about the Wolfram clinics at BCH, go to the ‘Clinic Dates and Information’ page on this site – https://wolframsyndrome.co.uk/clinic-dates-information/

WSUK Handbooks

News and Upcoming Events

RNC Open Day – Friday 27th November

For young people with a vision impairment and their families.

Come and discover what life at RNC is really like. Meet students and staff, explore our specialist campus, drop into lessons, and find out more about support, independence skills, funding, and future career opportunities. It’s the perfect opportunity for prospective students and families to see whether RNC is the right next step.

VICTA – Visit a Christmas Experience near you.

When: Thursday 1 October 2026 to Sunday 3 January 2027

Who: Families

Cost: Reimburse the cost of your VI child’s ticket up to a maximum value of £25 per child

Please note: One Christmas event offer per family

Join the festivities in your local area with the support of VICTA! VICTA is offering to reimburse the cost of your VI child’s ticket (up to 17 years) when you visit a Christmas experience as a family. You can choose an experience near you – this can include a Christmas light show, Christmas pantomime, theatre show or experience; the visit must take place on or before Sunday 3 January 2027. VICTA will reimburse up to a maximum of £25 per vision impaired child. to find out more click here

If you have any questions about this offer, please get in touch with the activities team at activities@victa.org.uk

RNC – Get Workplace Ready – starts Monday 15th February 2027

For young people aged 18 to 29 with a vision impairment who are not in education or employment.

Build your skills, confidence and workplace readiness through this three-month employability programme for 18 to 29-year-olds with a vision impairment. Starting with a five-day residential at RNC, you’ll receive expert coaching, accessible learning resources and ongoing support to help you take the next step towards employment.

RNC Activity week – Tuesday 16th – Friday 19th February 2027

For young people aged 14 to 17 with a vision impairment.

Join us for an exciting residential activity camp for young people aged 14 to 17 with a vision impairment. Enjoy sports, outdoor activities, social events and independence-building experiences while making new friends and developing confidence in a supportive environment.

My Medical Support

We’re proud to offer our community a practical tool that protects your health and supports our mission.

Thanks to our new partnership with My Medical Support, you’ll get:
✔ 10% off any subscription with code WOLFRAM10
✔ 15% donated to WSUK every time you sign up
✔ Peace of mind knowing your vital medical details are always ready to access – especially in an emergency

👉 Get started here:
https://www.mymedicalsupport.co.uk/?partner=wolfram-syndrome

More information can be found on the ‘Helpful Information for Families‘  page

The Royal Society of blind children has an activity calendar and access to assistive technologies please email: connections@rsbc.org.uk
Activity calendar: Calendar of Activities – RSBC

Over The Wall help children and young people reach beyond the boundaries of their health challenge. They offer both residential camps and Camp in the Cloud, which is their camp-at-home experience. All of their services enable their campers to build confidence by trying new things, creating friends, having fun and making lifelong memories!

To find out more go to their website here. To see the dates of their camps for 2026 click here.

VICTA put on a variety of VI events over the course of each year for children and young adults up to age 29. Some are free, others will have a charge. Events range from VI skiing, camps, sports weekends, family days and so much more.  To find out what they are doing look at their calendar of events here.

Deliver a wish for your child/Young Person – I’m compiling a list of our young people to deliver a wish or dream for them. Please check out the link below to see if your family qualifies and get in touch if you would like me to make a referral to any of the services. https://www.disability-grants.org/holiday-grants-disabled-children.html. This site also provides information about grants for holidays for families with a disabled child.

Disneyland Paris Have you ever dreamed of going to Disneyland Paris? Please follow the link to an external charity Full the Wish, to register for a a chance to go. There is a strict criteria, you must not have received a wish before, and only parents can apply.

 

If you have any suggestions on how we can lead a more youth led service, please do get in touch.