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Active Futures

Our aim is to support self-management of a condition deemed ‘incurable’ and inadequately serviced, to give better support and quality of life for a wide group of patients diagnosed with Ehlers-Danlos Type III (Hypermobility type) and possibly some Classic type BUT NOT (at outset) vascular EDS patients or any other type.

As part of this vision we would like to offer ‘Activity’ groups for children aged 5-16years. Physiotherapy, if offered, is time limited and many children are then expected to go on and join main stream sports clubs to continue their activity. Children with this condition often need to increase muscle strength to support lax joints, improve stamina in order to keep up with peers and have balance/co-ordination issues and gross motor skill delay. This means that children often lack confidence and basic skills to be ready for main stream clubs. Our aim is to provide a weekly activity group to provide consistent activity, a supportive environment to develop muscle strength, core strength and basic skills. Each child will be individually assessed and evaluated to track their progress. We also plan to link up with local sports clubs so that when the child feels ready and if they have an interest in a particular sport we plan to offer a handover, educating the club and supporting the child in the transition.

01923 271191

Addenbrookes Hospital

Cambridge University Hospitals (CUH) is one of the largest and best known hospitals in the UK. The Trust comprises Addenbrooke's and the Rosie, offering general and specialist and women's and maternity care respectively. As well as delivering care through Addenbrooke’s and the Rosie, it is also:

a leading national centre for specialist treatment for rare or complex conditions
a government-designated biomedical research centre
one of only five academic health science centres in the UK
a university teaching hospital with a worldwide reputation
a partner in the development of the Cambridge Biomedical Campus
CUH’s vision is to be one of the best academic healthcare organisations in the world.

01223 245151

Adult Autism Service (Bedfordshire)

Within Bedfordshire and Luton we provide an Adult Autism Service (AAS) for adults aged 18+.

The service provides assessment, treatment and advice for people who are suspected as having an Autistic Spectrum Disorder (ASD) and require a definite diagnosis, followed by help to access the most appropriate service e.g. health, social care or support group.

The service operates on a multi-disciplinary model of local and community based assessment and diagnosis and works alongside existing Specialist Health Services, Local Authorities, independent and voluntary services.

01234 310593

Bedford Hospital

If you choose Bedford you can be certain of high quality clinical care and treatment in clean, comfortable surroundings. We our proud of our short waiting times, excellent medical and nursing staff, ample car parking, which is free for disabled patients and visitors, and we are in easy reach by car, bus or train. We provide a wide range of services from our modern facilities including maternity, vascular (vein) services and cancer care. Our focus is on providing high quality clinical services and support for patients.

These trusts also provide services at Bedford Hospital South Wing

Moorfields Eye Hospital NHS Foundation Trust
Tel:020 7253 3411

East London NHS Foundation Trust
Tel:020 7655 4000

01234 355122

Bedfordshire and Luton Wheelchair Service

The key purpose for our service is to clinically assess and provide appropriate wheelchairs and associated equipment (posture and pressure care) to clients with a long-term mobility need, (over 6 months). The Wheelchair Service will continue to support the clients and maintain any issued equipment. Having the most appropriate mobility equipment can improve quality of life, facilitate independence, enable access into the wider community and reduce the risk of developing deformity for our clients.

The wheelchair service provides training for the community prescribers of basic wheelchairs for adult clients that are not totally wheelchair dependant. We offer specialist assessment for adult clients that are totally wheelchair dependent, all children and bariatric clients. We run a bespoke seating service for clients with complex postural needs that require made to measure / moulded seating. We are able to pressure map as part of a specialist pressure care assessment and provide a range of complex cushions. We work closely with seating companies and hold regular clinics for equipment trail or review.

Each new episode of care is completed within 18 weeks of referral and this is normally sufficient for most clients, however if something takes longer to resolve we would continue to work with the client until the clinical situation required. We accept referrals for review throughout the time the client has the equipment, and have an approved repairer contract to ensure that the wheelchairs are properly maintained while it is on issue.

We currently review all bespoke seating clients annually. We would like to offer a review service for all children and powered wheelchair users but we are currently not commissioned to do this.

01525 631349

Children's Community Nursing

We provides a range of services to support children and young people aged 0 - 18 years (which can be extended to 19 years to support transition to adult services for young people with special needs ) who require skilled nursing support in the community.
We provide specialist clinical support for families to enable them to care for their child in their own home, to avoid unnecessary hospital admission and promote high quality family centred care.

Our services:
1. Skilled Care of any nursing procedure that can safely be undertaken at home if a child or young person requires a specific clinical procedure for example intravenous, subcutaneous, intramuscular medication. Other examples include wound care and gastrostomy care.
2. Symptom Control Management if the child or young person requires a period of regular assessment and monitoring of symptoms, for example blood pressure monitoring or oxygen monitoring. The CCN's also support oxygen dependent babies, children/ young people at home and children with complex medical needs and work together with a range of professionals to assess plan and deliver care to maximise opportunities.
3. Education - if the family requires training to enable them to continue providing support and ongoing care, for example enteral feeding, suctioning and administration of medication.
4. Acting as advocate for child and family, identifying a Lead Professional in conjunction with family.
5. Acting as resource for other professionals to the right person, at the right time care for the child/young person in the right way.

01234 310103

Children's Continuing Care Team

The aim of our service is to support children with complex medical continuing healthcare needs to live within their family home and fulfil their potential as individuals. This includes supporting them in a variety of settings in the community for example, schools and nurseries. Without the support of the team many families would find it impossible to continue to care for their child at home.

01234 310103

Community Heart Failure Nurse Service

The Heart Failure Nurse Service aims to enhance the care of patients with a diagnosis of heart failure, improving quality of life and ultimately preventing avoidable admissions to the acute sector. This is achieved by focusing on improving patient self-management, through education and support, also offering educational sessions to staff in primary care.

The service provides both on-going clinical management of the condition by nurse prescribing, self-management advice and support components and actively encourages the involvement of the family and carers. The service enhances primary care through independent nurse prescribing.

07768 244036

Contact A Family

Contact a Family is a national charity for families with disabled children

We provide information, advice and support. We bring families together so they can support each other. We campaign to improve their circumstances, and for their right to be included and equal in society.

Please click the link to open to the Contact A Family website

0808 808 3555

Down's Heart Group

Provides support and information for families and carers of people with Down's Syndrome and heart issues, specifically related to the heart but touching on other areas as affected by the medical problems.

03001 021644

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