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.
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 KLRT Supporters CLub 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.