Направления поддержки сообщества

Цель

DEBRA стремится предоставлять услуги поддержки сообщества, которые работают в соответствии с самыми высокими стандартами, предоставляя эффективные, действенные и конфиденциальные услуги. Наша цель — сделать доступ к сервису простым и прозрачным.

Связанные документы

• Политика членства
• Политика GDPR
• Политика DEBRA для лиц, не являющихся гражданами Великобритании
• Политика защиты
• Справочник сотрудника DEBRA – конфиденциальность, ведение документации
• Политика DEBRA в отношении комплиментов и жалоб
• Политика запроса доступа к субъекту DEBRA

Используемые термины

• Members – People living with a diagnosis of EB or close family that have joined DEBRA’s free membership scheme.
• CST – DEBRA Community Support Team.

конфиденциальности

Группа поддержки сообщества DEBRA EB

Команда поддержки сообщества DEBRA EB напрямую помогает людям, живущим с EB, и окружающим их людям. Мы понимаем, что каждый сталкивается с уникальными обстоятельствами, и мы будем работать с людьми, чтобы понять проблемы, с которыми они сталкиваются, и согласовать индивидуальный план совместной работы, чтобы свести к минимуму проблемы и улучшить качество жизни. Если мы не можем оказать непосредственную помощь, мы делаем все возможное, чтобы связать членов с другими организациями, которые могут помочь, как на местном, так и на национальном уровне.

We forge close working relationships with specialist EB clinical teams and other health and social care professionals to connect members with the services needed.

We are working towards a pro-active support service and a holistic toolkit of support available so that members have the information needed 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 members 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, 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.

The DEBRA Community Support Team managers typically work Monday–Friday between 9am and 5pm, excluding bank holidays and the period between Christmas and New Year. The team provide a helpline Monday to Friday, 8am to 5:30pm. The team aim to respond to people as quickly as possible and to acknowledge all referrals within four working days.

Право на доступ к услуге

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

DEBRA 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. CST 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.

Как сделать реферал?

Общие вопросы и направления можно направлять в службу поддержки сообщества EB:

Электронная почта: communitysupport@debra.org.uk

CST information & Enquiries line: Available Monday to Friday, 9am–5pm, on 01344 577689.

Справки могут быть сделаны:

• Эл. адрес
• Телефон
• Пост
• Лично

Получение направлений

CST 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, the NHS, including our EB clinical teams, GPs, schools, colleges or housing associations.

Распределение направлений

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 area manager allocated to referral management.

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

During busy periods, we will use a waiting list. Referrals will be triaged and prioritised according to urgency. All members will continue to receive our service, but there may be a longer than usual wait time. We will communicate this to members and provide them with anticipated wait times.

Направление в другие агентства

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

Защита данных и согласие

The EB Community Support team will ask for consent to receive our services and to include the member’s details on the EB Community Support team database. Consent will be recorded on the 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 Membershipity 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.

Если лицо, делающее направление, не является лицом с ЭБ, согласие на направление должно быть получено от лица с ЭБ, родителя, опекуна или представителя.

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

If a health or social care professional or 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, for example a referral from an EB nurse for a newborn baby, we may keep records of the initial request and correspondence for a period of 12 months before they are deleted. In most cases we will have gained consent within a six-month timeframe.

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.

Согласие обычно дается в устной форме, после чего отправляется электронное письмо или текстовое сообщение с дополнительной информацией о том, как мы можем помочь. Это отмечается в базе данных менеджером поддержки сообщества.

Please see the gaining consent procedure for the full process.

Более подробная информация об услугах, предоставляемых командой поддержки сообщества EB, доступна на веб-сайте DEBRA.

Документация, записи и конфиденциальность

CST хранит записи по делу и сопутствующую документацию, касающуюся лица или семьи, которые запросили поддержку через CST и дали на это согласие. Эти записи фиксируют каждое взаимодействие или эпизод работы, выполненной от имени участника. Копии заявлений на получение пособий и клинических писем могут храниться для помощи в оспаривании решений и заявлений в трибунал.

The information stored is only accessible to the Community Support Team and no other departments within DEBRA. Relevant information may be shared within DEBRA and with 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. All requests must be made in writing. Please see the DEBRA Subject Access Request Policy.

Feedback, complaints and engagement

DEBRA стремится к достижению самых высоких стандартов во всей своей деятельности. Мы всегда открыты для комментариев и предложений по улучшению нашего сервиса. Мы приветствуем любые отзывы и стремимся активно взаимодействовать с участниками.

If the person making the referral, 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 that they share their feedback with their Community Support Manager, Team Leader 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.

Изменения в нашем режиме работы из-за пандемии или аналогичных обстоятельств

DEBRA будет следовать указаниям правительства в случае пандемии или других подобных обстоятельств.

This may mean there are some restrictions in the services offered or the availability of colleagues to undertake work. We may also need to adapt the way we work. We will, however, strive to offer the best support possible. Our support may be carried out over the phone, by email, via a video platform service such as Zoom, or in person at a hospital clinic or member event and, when necessary, through a visit to a school, workplace or home.

This policy was updated on 8 October 2026.