DEBRA is committed to providing a free, fair and accessible Community Support service which is open to anyone living or working with EB across the UK.
This document outlines how to make a referral to the DEBRA EB Community Support Team and how they are managed.

Table of contents

  1. Purpose
  2. Related documents
  3. Terms Used
  4. Policy

1. Purpose

DEBRA aims to provide a Community Support service which operates to the highest standards, giving an efficient, effective and confidential service. Our aim is to make access to the service easy and transparent.

2. Related documents

3. Terms used

  • Members - People living with EB or close family that have joined DEBRA’s free membership scheme
  • CST - DEBRA Community Support Team

4. Policy

1.1 The DEBRA EB Community Support Team

The DEBRA EB Community Support team directly helps people living with EB and the people around them. We recognise that everyone faces unique circumstances, and we will work with people to understand the challenges they face and agree an individualised plan to work together to minimise the challenges and improve quality of life. If we are unable to provide direct assistance, we do our best to connect members with other organisations that can help, both locally and/or nationally.
We forge close working relationships with specialist EB clinical teams and other health and social care professionals to connect clients with the services needed.

We are working towards a pro-active support service and a holistic toolkit of support available so that you have the information you need to make informed decisions and maximise quality of life.

The DEBRA EB Community Support service is not intended to replicate or take over the responsibility of statutory agencies. It is designed to work in partnership with people living with EB and to support them when communicating with statutory agencies and health and social care services.

The DEBRA EB Community Support Managers work with individuals and families, providing information, advocacy and support services for issues such as benefits, accessing medical and social care, finance, housing, education, employment and emotional support. The team has knowledge and experience of working with people living with EB. They know how particular issues of EB may affect family life, someone’s functioning, housing, work and leisure needs. Crucially, the team are experienced in communicating these things to other agencies.

Our Community Support Team work Monday – Friday between 9am to 5pm., excluding bank holidays and between Xmas and New Year. We aim to respond to people as quickly as possible and usually this is within 24 hours. We aim to respond to all referrals in 3 working days.

1.2 Eligibility to access the service

The DEBRA Community Support team support is available for all DEBRA members. DEBRA membership is free and open to anyone living in the UK with EB and to their immediate families

We can support individuals living with EB, their partners and families with any issues relating directly or indirectly to EB . This is a free and confidential service and we do ask that members consent to working with CST , and for their information to be stored in line with our GDPR policy . We are also happy to help raise awareness and provide information to organisations and other agencies such as social care teams, education providers, employers and more.

1.3 How to make a referral?

General enquiries and referrals can be made to the EB Community Support team by directly contacting one of the DEBRA EB Community Support Mangers or contacting the Membership team:

Email: [email protected] Tel: 01344 771961

Referrals can be made by:

  • email
  • telephone
  • post
  • in person

1.4 Receiving Referrals

We receive requests for support or information (referrals) from various sources Referrals can be made directly by individuals, family members or other agencies such as: charities, social services, NHS including our EB clinical teams, GPs, schools, colleges or housing associations.

1.5 Allocation of referrals

All referrals must be recorded and are prioritised and allocated according to the needs of the person requiring support. This is usually undertaken by the CST National Manager.

Consideration is given to allocate the most appropriate Community Support Manager taking into account current caseloads, area of special interest and the support requested. We may also consider location, in case a home or school visit might be required. Our Community Support Team cover all of the UK, including Scotland, Wales and NI and therefore a CST Manager may be allocated to work with a member based on their current workload or skills, and not necessarily based on geographical location.

1.6 Making referrals to other agencies

After receiving a referral, it may be appropriate to refer onto another agency. We will gain consent for the member to do this and follow GDPR guidelines when handling personal information.

2.1 Data Protection and consent

The EB Community Support team will ask for consent to receive our services and to include the members details on the EB Community Support team database. DEBRA fully complies with the Data Protection Act 1998. Please refer to the DEBRA Data Protection policy.

Information is kept confidential and not shared with other agencies or organisations, or outside of the Healthcare Membership and Community Support Directorate without consent from the member unless there are concerns for welfare according to the DEBRA Safeguarding Policy and within lawful guidelines set out in the GDPR and Data Protection Act.

If the person making the referral is not the person with EB, consent to make the referral must be obtained from the person with EB, the parent, guardian or representative.

If the person making the referral contacts the Membership team, only brief contact details will be taken (name, address, telephone number, general reason for referral) and the referral will be sent to a Community Support Manager to complete the process.

If a health or social care professional / practitioner makes the initial referral, it is their responsibility to obtain consent from the client or the client’s representative to share the client’s personal information.

Where we have received a request for support but no consent (e.g. a referral from EB nurse for a new born baby) we may keep records of initial request and correspondence for a period of 12 months before being deleted. In most cases we will have gained consent within a 6th month time frame.

The referrals process, recording of data, and client satisfaction will be audited, to monitor and maintain good standards of record keeping and compliance with current legislation.

Consent is usually gained verbally and followed up with an email or text with additional information on how we can help. This is noted on the database by the Community Support Manager.

Please see gaining consent procedure for the full process.

Further details of the services provided by the EB Community Support team are available on the DEBRA website.

2.2 Documentation, records and confidentiality

The CST keep case notes and related documentation relating to the individual or family that has requested support via the CST,and consented to this. These notes record every interaction or episode of work carried out on behalf of the member. Copies of benefit applications and clinical letters may be held to aid with challenging decisions and tribunal applications.

The information stored is only accessible to the Community Support Team and not other departments within DEBRA. Relevant information may be shared within DEBRA and to our EB clinical colleagues on a need to know basis and in accordance with members wishes.

Members can request a copy of their records in accordance with the Subject Access Request Policy, and all requests must be made in writing – please see DEBRA Subject Access Request Policy.

2.3 Feedback, complaints and engagement

DEBRA is committed to achieving the highest standards in all its activities. We are always open to listening to comments and suggestions for improving our service. We welcome any feedback and strive to actively engage with members.

If the person making the referral or the client or the client’s relative or representative wishes to make a complaint about the EB Community Support referral process or the service, we ask in the first instance, please share feedback with their Community Support Manager, and/or the National Manager – Community Support Team. All feedback is logged on our secure database and reviewed to help develop and improve our service. If a further response is needed, please refer to the DEBRA Compliments & Complaints Policy.

2.4 Changes to the way we work due to a pandemic or similar circumstance

DEBRA will follow government guidance in the event of a pandemic or other similar circumstance.

This may mean there may be some restrictions in the services offered or availability of staff to undertake work. We may also need to adapt the way we work. We will however strive to offer the best support possible. This may be over the phone, email or via a video platform service like zoom.