Supporting the transition from EB child to adult with EB

Great Ormond Street Hospital in London specialises in treating children with EB, so as you grow into a young adult, at the age of 16 you will gradually transition to the adult EB healthcare service offered at Guys & St.Thomas’ Hospital, also located in London. 

During your transition, an EB nurse from Guys & St Thomas’ will come and meet you at one of your scheduled appointments at Great Ormond Street, additionally both hospitals will arrange a joint home visit. The objective of these meetings is for the adult EB healthcare team to get to know you and your needs, and to get the required handover of information from the children’s services team. It will be a gradual transition and you will be kept fully informed at every stage.  

The healthcare professionals who will be able to support you at Guys & St Thomas’ include dieticians, who can provide dietary recommendations suitable for your type of EB, and which promote good would healing, occupational therapists, and podiatrists to support you with your mobility, dentists to support you with your dental health, and psychotherapists, who can provide mental health support. 

For patients transitioning from children services to young adult services in Birmingham, the transition starts a bit earlier normally at 12 years of age. This is done in 3 steps – Ready, Steady, Go! These steps are completed at 12, 14 and 16 years old and the paperwork for each step will be completed during clinic appointments where there is an opportunity to discuss any concerns or worries you may have about moving to adult services.  

A member of the adult EB services team from Solihull Hospital will be invited to your last appointment at Birmingham Women’s & Children’s Hospital, so you can meet someone from the adult EB team before you transition.  

If you have a more severe type of EB, the Solihull team will be invited to joint home visits and clinic appointments for the last 12-18 months of your transition, which provides the opportunity for them to get to know you and your specific needs.  

At Solihull Hospital you will have access to clinicians with specific experience of supporting EB patients with pain management, gastrointestinal, which is anything to do with your stomach and intestines, plastic surgery, podiatry, which is managing your feet, your mental health, your diet, your eyes, and mouth and with any physiotherapy needs to support your mobility.

The transition to adult EB services in Scotland takes place when it is felt appropriate for the individual, but this is typically around 17 years of age. This is less of a transition because in Scotland, clinicians will see both children and adults with EB.    

An EB specialist nurse from the adult services team at Glasgow Royal Infirmary will attend one or two of your appointments at the Glasgow Royal Hospital before the transition takes place to get to know you better and to ensure a smooth handover. 

There are no specific services attached to the adult EB team at the Glasgow Royal Infirmary and so if you have specific needs such as seeing a podiatrist or dietician, you will be referred to these services as and when they are needed. 

Further education is any study you do after completing your secondary education, whether  that’s sixth form, college etc. it’s the step  before undergraduate and/or postgraduate courses.  

If you have an Education, Health, and Care Plan (EHCP), you can continue to receive funding for further education courses up until you are 25 years old depending on the following: 

• The needs and outcome that is described in your EHCP. 

• Your progress, as well as the relevance of the course (does this build on previous learning). 

• If the chosen course suits your needs and is a relevant resource. 

There are also several different funds and grants that you may be able to access to support you financially during further education, please check out the links below for more information and eligibility criteria or contact the DEBRA EB Community Support Team who will be able to help you find the most suitable fund and/or grant. 

• 16 to 19 Bursary Fund: Eligibility – GOV.UK (www.gov.uk) 
• Grants – Snowdon Trust 
• Funding Further Education for Disabled Students | Disability Rights UK 
• How to apply for college in the UK | Prospects.ac.uk 

Higher education is the third level of education after secondary school, and further education. It’s typically undertaken at a university and includes undergraduate (degree) and postgraduate studies (master’s degree, PhD etc).  

If you have an EHCP, unfortunately this will no longer apply when you go to university. However, every university should offer mentoring and 1:1 support. This is something to consider when looking at suitable courses and universities.  

Student loans are available, as well as Disabled Student Allowance and other benefits. Additionally, there may be other grants and funds you are entitled to which a member of our EB Community Support Team can help you with. 

There are different routes available should  you wish to combine work and study, including: 

• Traineeships – these are courses that include a work placement. You will spend a minimum of 70 hours in a work placement with the rest of your time in a college or training centre. You need to be aged between 16 to 24 (or up to 25 with an EHCP with no higher than a level 3 qualification). 
• Supported internships – Supported internships are for young people with learning difficulties or learning disabilities, who need extra support to get a job. You will spend most of your time on work placements, learning essential skills for work. These are only available if you are aged 16 to 24 with an EHCP. 
• Apprenticeships – Intermediate, advanced higher and degree apprenticeships combine practical ‘on-the-job’ skills training. You’ll spend 80% of your time in the workplace and 20% studying at college or training centre. Entry requirements vary depending on the sector and job role.  
• School Leaver Schemes – These are often with a large company and offer the opportunity to learn and earn! They’re like a graduate employment scheme and can take anywhere from 3 to 7 years. To qualify, you will usually require high grade A levels or equivalent. 

If you would like to find out more about any of these work and study opportunities, please contact the DEBRA EB Community Support Team. 

The Department for Work & Pensions (DWP) will contact you when it is time to make a claim for PIP, once they have made contact you will have four weeks to start your PIP claim.  

When making a claim for PIP, you will be given the option to start managing your own money and benefits.  

Many people who receive DLA will qualify for PIP, but it’s not guaranteed. If the DWP say you are not entitled to PIP, unfortunately your DLA will automatically stop. However, you can challenge this decision, which is something that our DEBRA EB Community Support Team can support you with. 

Once awarded, CDP is payable until you reach 18 years (or older in exceptional cases). From the age of 16 years, Social Security Scotland will arrange for payments to be made directly to you, instead of your caregiver. There are however circumstances in which this is not always possible, for example if you are not able to manage your finances due to your disability. 

You need to make a claim for ADP with Social Security Scotland before you reach the age of 18, and once you have made the claim you will continue to receive CDP while you are awaiting a decision.  

You can make a claim for UC from the age of 16 if any of the following criteria applies to you: 

• You have a health condition or disability and have medical evidence of this. 
• You’re caring for someone who gets a health or disability related benefit. 
• You’re responsible for a child. 
• You do not have parental support, for example you do not live with your parents and are not under any local authority.  
• You are pregnant and expecting in the next 11 weeks or had a baby is the last 15 weeks.  

You can also claim UC if you are in full-time education and have been assessed as having limited capability for work by a Work Capability Assessment before starting your course.  

You must also be in receipt to any of the following: 

• Personal Independence Payment (PIP)
• Disability Living Allowance (DLA) 
• Child Disability Payment (CDP) – Scotland 
• Adult Disability Payment (ADP) – Scotland 

Applying for benefits can be a bit intimidating but there is no need to worry, our EB Community Support Team have supported many members of the EB community with their benefit applications and will be more than happy to help you navigate the process. Please contact them should you require any support.