The KCH Limb Reconstruction Trust
This is a new Charity, established this
year, to help patients with limb deformity or poorly healing fractures (or both) who are having treament at King's College
Hospital.
Background:
Patients with limb deformity, whether
congenital or acquired can now have surgical correction of this deformity. However, treatment is rarely simple, and is often
prolonged. Support is required throughout the treatment period.
Similarly, patients with fractures that
will not heal with first line treatment often suffer greatly. They are often male, and often aged 20-50. The most common fractured
bone in this group of patients is the tibia (shin bone) due to relative exposure and poor soft tissue cover. These patients
are usually working males, frequently in heavy physical jobs. Time off work is often prolonged. It is not uncommon for treatment
to take many months or even years. During this time multiple operations are commonly required. Patients will frequently find
their employment at risk. Financial pressures are enormous and job loss is common. Inability to walk or drive leads to reduced
independence, and increasing reliance on others. Married patients find relationships strained and divorce may follow. Loss
of self-esteem is not surprising. Depression ensues in some cases.
Patients in this group have overall scores
of patient wellbeing (such as the SF36 and NHP) showing consistently very poor results.
There is no current UK registered
charity to support this group of patients.
King’s College Hospital Orthopaedic
Department has 6 surgeons with a stated interest in poorly healing fractures, with a tertiary referral pattern from the whole
of South East London, Kent and Sussex as well as some from beyond this territory.
This service is termed the Limb Reconstruction
Service and calls on the expertise of these surgeons, but also one full time Specialist Nurse, specialised theatre staff and
equipment, and surgeons in training gaining insight into this emerging subspecialty.
Surgeons in this field from across the
UK have a specialist society, under the auspices of the British Orthopaedic Association (BOA), called the British Limb Reconstruction
Society (BLRS). Four of the surgeons at King’s are members of this society. The BLRS organises annual meetings to discuss
issues relating to this field, and present papers from similar centres. The 2007 meeting will be hosted at King’s.
Objectives:
To support patients with:
- congenital
or acquired limb deformity
- fracture
which have not healed in the time normally allowed for a given fracture to unite
- fractures
which have healed with residual complications
who are having their treatment
at King's College Hospital.
Main means of support for eligible
beneficiaries:
Communal, code protected area with supplies
of stock items for patients, for example:
Pin cleaning dressing packs and antiseptics
Pin caps
Nuts and bolts for various frames
Spare spanners
Physiotherapy accessories (eg Therabands, toe slings)
The room could also be fitted with Internet
access for access to online information, support groups, messaging and e-mail. The same PC could be used for DVD viewing and
reading CDs with educational resources for patients.
Coffee and tea making facilities would
hopefully create an environment where patients could meet each other and learn techniques for coping with the taxing, and
often prolonged treatments involved. Simple adjustments are often required: shoes and clothing may need adjustment to fit
over frames, and simple tips such as putting ‘cling-film’ over soup or drink containers to allow patients to carry
such items from the kitchen to dining area whilst using crutches, can change quality of life substantially at what is a very
difficult time.
Some adjunctive therapies for these patients
are currently not available to NHS patients. Whilst surgeons continue to campaign across the UK for funding of these therapies,
they remain unfunded in most centres.
Examples include pulsed electromagnetic
field devices (PEMF), low frequency ultrasound (LFUS) and growth factor therapies (such as bone morphogenetic proteins –
BMPs).
External stimulation of fractures, by
PEMF or LFUS, has been shown to be effective. This approach may avoid the need for surgery altogether simply by the patient
wearing a lightweight painless device for a small part of each day.
BMPs avoid the pain and disability inflicted
by the site from which bone graft is harvested (commonly the iliac crest of the pelvis) and may improve healing rates for
fractures. These are currently unfounded by many Trusts.
There are many further avenues for exploration
for this charity: specialised counsellors, extra facilities for 24 hour support, research support and audit of outcomes.
Potential Sources of Income
The Charity could receive funds from
several sources:
Donations from the public
Donations from organisations and corporate sponsors
Many meetings to promote education and
collaboration in limb reconstruction are conducted in the UK. These require subscription fees from delegates and are often
supported by contributions from corporate sponsors. These meetings often generate profits as a result, and the funds will
be channelled into diverse departmental accounts to support educational and research activity. Having a charitable organisation
receiving this money would have financial advantages. It would also help to regulate the way the money is spent, with Trustees
being responsible for applying criteria for requests.
Trustees
The board of Trustees includes specialist
surgeons and nurses, patients, a legal advisor, an accountant, and a lay member.
