Hypermobility

The hypermobility service at RNOH is a nationally recognized service, and provides the only in-patient rehabilitation for hypermobility patients in the UK. We have developed unique expertise in managing the most severe and complex end of the patient spectrum, and a combination of rheumatology, rehabilitation, metabolic bone, sports medicine, pain management, psychology, psychiatry and orthopaedic expertise in one centre.

RNOH collaborate with the hypermobility service at UCLH and has links with the two main patient support groups/charities in the UK.

The service focuses on the management of the musculoskeletal aspect of hypermobility conditions, and access onto the Trust’s Rehabilitation Programme for appropriate patients. The programme utilises a combined pain management/rehabilitation approach aimed at providing the patient with long term self-managed coping skills, and an exercise programme for them to continue independently +/- local therapy support as indicated. The service cannot offer long term follow-up of patients.

Our service is based at a specialist musculoskeletal centre and therefore we do not have the expertise or facilities to investigate the non-musculoskeletal problems that many patients have. We are unable to treat patients whose symptoms are dominated by other medical problems such that they cannot engage with a musculoskeletal rehabilitation programme. We strongly believe in integrated patient-centred care and therefore recommend that such patients are referred to musculoskeletal clinics based in a General Hospital where there is access to other medical specialties. Patients must be psychologically prepared to participate in the Trust’s inpatient rehabilitation programme.

Patients need to have completed any outstanding investigations and for allied medical problems to be stabilised prior to referral.

Method: / Referring clinicians will need to submit a completed referral form with the referral letter. The referral form can be obtained from the Trust website.
All elective referrals will be triaged against the criteria set out below. Referrals that do not meet these criteria will not be accepted.
The hypermobility service at RNOH is a collaborative consultant-led service with clear pathways of care. Accepted referrals for hypermobility are not assigned to individual clinicians, and patients may be seen by any one of the Service’s specialist consultants and staff grade doctors. The service operates a policy that the care of a patient cannot be switched to another member of the team. This is to prevent fracturing of care and manipulation of health care services.
Referral Acceptance Criteria / §  The service treats adults aged 18 years or more
§  Patients outside the Trust’s local commissioning catchment area (NHS CCGs of Camden, Barnett, Harrow and Herts Valley) must have been reviewed, diagnosed with hypermobility and referred onward by an NHS Trust Rheumatology service
§  Patients must be able and willing to make themselves available for the duration of the Trust’s three week inpatient rehabilitation programme
Referrals will not be accepted for the following:
§  Patients with outstanding investigations
§  Completely bedbound patients, or patients who spend 75% of their time in bed
§  Patients with recurrent faints, functional disorders or non-epileptic seizures that would prevent them undertaking a daily in-patient pain management /rehabilitation programme or sustained out-patient therapy
§  Patients with active uncontrolled anorexia
§  Patients on extremely restrictive diets; patients on tube feeds or TPN with unstable weight or who cannot self-manage their regime
§  Patients with poorly controlled concurrent psychologic/ psychiatric conditions such that they could not engage with the programme
§  Patients with concurrent psychiatric comorbidity such that they cannot participate in group sessions, or lack interpersonal skills/insight to cope with staying on a hospital ward
§  Patients with uncontrolled drug addiction or alcoholism
§  Patients with current inadequately controlled issues with physical aggression
§  The Trust operates a patient code of conduct policy. Patients persistently breeching these conditions will be discharged
Supplementary
notes: / Range of services / §  Close collaboration with physiotherapy, occupational therapyand psychology
§  Inpatient programme focussing on long term self-management skills, with multidisciplinary team input from physiotherapist, occupational therapist and psychologist