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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.
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.
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
We offer 1:1 counselling to young people aged 13-25 yrs in Bedford Borough. Clients are offered 12 sessions of counselling which may be extended where necessary. Clients come for counselling to deal with issues in their lives which are stopping them living full and productive lives. We do not provide on going support but may sign post them to other services where appropriate. We also have 2 counsellors working in 2 upper schools in Bedford Borough.
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.
We’re here to help. Whatever the cause of your anxiety or depression, sharing your problems could be the first step to recovery.
The Child and Adolescent Mental Health Service (CAMH) provides outpatient assessments, support and treatment for children experiencing moderate to severe mental health problems in young people up to the age of 18. The service works to provide patients with a greater knowledge of their condition and improve coping techniques.
The service provides help to children and to the wider family, including children living with foster parents, children who have been adopted and young people living in children's homes. The service may see children and adolescents on their own, with their parents or with their family, and may also see parents on their own.
Community Learning Disability Team:
Provides assessment and intervention for children up to the age of 18 who have a learning disability and associated severe challenging behaviour or mental health problems.
Home Treatment Team:
Provides high intensive community based treatment using a care pathway approach and regular visits to patient's home or preferred location. In a few cases, where home treatment is not an appropriate option, then the team may need to consider an inpatient admission.
Looked After Children's Team:
Offers support to young people who may be accommodated or under Care Orders with the local authorities.
The service provides Paediatric Medical and Nursing Services to children and young people with the following conditions:
•suspected developmental delays or disorders;
•neuro-developmental problems such as Autism Spectrum Disorders, Cerebral Palsy;
•ADHD and associated behavioural problems (excluding anxiety disorders, depression, mood disorders, Obsessive Compulsive Disorders, suicidal tendency);
•Developmental Co-ordination Disorder / Dyspraxia;
•Enuresis, encopresis and constipation;
•Special Educational Needs (we do not accept referrals to confirm/rule out dyslexia);
•safeguarding concerns, alleged neglect, physical, emotional, sexual abuse;
•adoption, Looked After Child medicals;
•children with additional needs/disability and having sleep/ behaviour/ toileting/feeding problems (in Nurse led clinics at CDC).
It also investigates, assesses and diagnoses other underlying medical problems. Referrals to other professionals/agencies made where appropriate.
In addition, it provides specific role related functions like:
•Named Doctor for safeguarding children
•Designated Doctor for Education
•Lead Doctor for NHSP & LAC
•Medical Advisor to Adoption Panel
•Lead Paediatrician to CDOP
The service complies with statutory requirements and has extended its role to develop health activities in line with “Every Child Matters”.
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.
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.
The Children’s Continence Service promotes continence for children and young people in Bedfordshire and Luton. The service is primarily for special needs children who require help and support with toilet training including daytime wetting, constipation and soiling.
At the initial assessment, information and advice is given on helping the child acquire toileting skills including routines and recommended fluid intake. Families will be informed how to access a provision of nappies, if appropriate to the child’s needs.
Other help we can give includes workshops on toilet training; advice on intermittent self-catheterisation; visual symbols, reward charts and care plans; telephone advice; liaison with education and social services staff and follow up assessments.