Aims of the trust

Why limb reconstruction patients are different:

Their initial treatment, often lengthy, has generally failed
Further treatment may be beyond the resources of the local hospital
In addition to the physical condition, they may be suffering the effects of prolonged incapacity, pain, uncertainty and distress
They may have lost confidence in the treating hospital
They may be angry or litigious
They will always have a difficult combination of physical and psychological problems imposed by prolonged pain, together with physical, social, domestic, relationship, employment and financial hardship.

The overwhelming majority of patients referred are working-age adults with disunited fractures, or post traumatic deformity or disability. They are some way along a journey which can be between six months and 10 years, but the majority have been under treatment at another hospital for about two years. For most patients, the Limb Reconstruction Service represents a point of decision: to accept reconstruction with the implications of prolonged treatment, which is sometimes difficult to endure, or to accept amputation.

Aims of the trust

to support patients with fractures which have not healed in the time normally allowed, or have healed with complications
to identify the needs of limb reconstruction patients
to address their needs which are unmet by the NHS
to educate the public and raise awareness of the difficulties faced by disabled people
to act as advocate for limb reconstruction patients
to support the clinical, educational, training, research and administrative work of the King’s College Hospital Limb Reconstruction Service
to disseminate information about the service
to educate and train medical and nursing staff in the community who treat patients post discharge or between procedures
to participate in safety awareness programmes
to provide advice on health and safety.

Needs

There are around 350 patients undergoing treatment at any time, and average treatment lasts two years.

Patient surveys show that:

80% of patients are not working during treatment
66.6% were their family's main breadwinner before treatment
only 20% receive sick pay from employers during treatment, leading to
66.6% having financial problems during treatment.

Servicing the needs

The NHS only assists with the obvious clinical needs of patients, but social needs and support are not funded.

The trust will:

lobby where it can
appoint a fully funded peripatetic nurse to work in the community
educate local health care providers to improve understanding of limb reconstruction treatments
create opportunities for socialising with other patients and ex-patient.

It will provide

equipment to speed recovery, not available on the NHS (e.g. ultrasound/pulsed electromagnetic therapies)
additional nursing care and community-based / home-based treatments
occupational health advice to assist the patients in their homes
psychological counselling
advice on financial issues and statutory benefits
opportunities for training and development between periods of treatment
orthotics – specialised surgical appliances to assist recovery.

Our achievements so far

The trust has established a charity to support the needs of limb reconstruction patients

The Friends have organised several successful fundraising events to raise money and awareness

The trust has recruited and appointed a specialist physiotherapist jointly funded by the KCH NHS Foundation Trust

It has lobbied King's College Hospital for an extra Limb Reconstruction Nurse

The trust has set up a patient information website to support the treatment of limb reconstruction patients
The trust has conducted a patient survey to establish the patients' views on priorities for the charity
The trust has produced, with students at Ravensbourne College of Design and Communication, an instructional video for patients and health advisors.