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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
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
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.
Hinchingbrooke Health Care NHS Trust provides high quality health care for the people of Huntingdonshire and surrounding areas. More than 160,000 people rely on our district general hospital for a range of services and we are renowned locally for our warm and friendly approach.
As the first NHS Foundation Trust in Bedfordshire, Hertfordshire and Buckinghamshire - and the best hospital in the East of England (CGC 2009) - our top priority is to offer the best possible patient experience - putting the patient first every time.
As the first hospital in England to be selected by the Health Foundation for our work on improving patient safety - an area in which we continue to excel - the L&D continues to be an agent for change by involving patients and FT members in re-desigining and improving our services.
During 2009-10 we continued to reduce our MRSA and C.diff infections helping us to retain our reputation as one of the safest hospitals in the country.
The L&D's reputation attracts top clinicians and specialists, together with some of the most experienced and caring nursing staff.
East London NHS Foundation Trust (ELFT) provides mental health services for people in Bedfordshire.
The service has been commissioned by Bedfordshire Clinical Commissioning Group (BCCG), in partnership with Central Bedfordshire Council and Bedford Borough Council.
We are committed to the ongoing development of mental health and learning disability services.
We are a medium sized district general hospital, serving Milton Keynes and surrounding areas. The hospital has approximately 400 inpatient beds, and provides a broad range of general medical and surgical services. We have a busy A&E Department that manages all medical, surgical and child health emergency admissions. As our local population grows, we continue to develop our facilities.
In addition to providing general acute services, Milton Keynes Hospital increasingly provides more specialist services, including cancer care, cardiology and oral surgery.
We have responsibility for treating premature babies born locally. Some of the babies we treat are born as early as 24 weeks old (16 weeks early), and weigh as little as 500 grams.
One-to-One support to Deafblind children and adults, acting as an enabler for the individual to help in their social and personal development, as well as health and general wellbeing.
By providing one-to-one support to congenitally Deafblind children or adults, an Intervenor acts as an enabler, promoting the person's social and personal development, encouraging their independent skills and facilitating their communication with the world around them. Intervenor support may be provided in the person's home, in their local community, in an educational or vocational setting or a combination of these.
Intervenor schemes are usually funded by direct payments, individual budgets, social services, local health or education authorities. A person-centred approach to planning for leisure, learning, social, and vocational opportunities, enables Deafblind people to develop new skills and increase their independence. Individual programmes focus on daily life experiences and will include encouraging the use of residual vision and hearing, communication, development of cognitive skills, mobility, orientation and social skills.
Activities which might be included in an individual plan are: college courses, sport and leisure, art and craft activities, shopping, cooking, IT, use of public transport. Choices are made by the Deafblind person to suit their needs and interests.