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

Requests for flexible working if you are a working parent of a disabled child.

The Act defines a statutory request as a request for a change to an employee’s terms and conditions relating to their hours, times or place of work. The Code provides guidance for employers and employees on their legal rights, responsibilities and good practice in making and handling statutory requests for flexible working.

Acas Code of Practice on requests for flexible working (HTML version) – GOV.UK (www.gov.uk)

Flexible working | Acas

The Carer’s Leave Act

The Carer’s Leave Act has opened up many more possibilities for carers who are employed. These new changes will come into effect from the 6 April 2024.

See how this could help you by clicking here

 

Upcoming Events

RNC Open Day – 19th September For prospective students and families who have a young person with a visual impairment. Are you interested in learning more about the Royal National College for the Blind? Come and visit us on Friday 19 September, and spend the day touring the college campus, including residential areas, teaching facilities, and sports academy. The day includes a free lunch and the opportunity to meet staff and students. Click here for their booking form.

‘Have a Go’ Activity Weekend – Saturday 25th to Sunday 26th October 2025 – For young people aged 13 to 17 with a visual impairment and their families with FREE accommodation for everyone! This fun-filled taster weekend focuses on promoting independence and includes engaging sessions such as V.I. sports, music production and cooking skills. There is a social Saturday night for the young people to go bowling, while the adults enjoy an evening meal at RNC. Attendance is free and includes accommodation and meals for the whole family. Book your place here.

Get Workplace Ready – Monday 27th October 2025 to the end of January 2026 – A FREE self-led three-month course for young people aged 18 to 29 with a visual impairment. This programme will help individuals navigate the world of work through a blend of in-person small group coaching and accessible online learning. It will begin with a five-day residential at RNC before receiving ongoing remote support over the following three months to develop your practical skills and achieve your career goals. Book your interest here.

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 2025 click 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.