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Transferring Equity To Healthcare

This article explains the challenges associated with transferring people with learning disabilities and the flexibility required to overcome these.
NECTAR ambulance decorated for a patient with learning disabilities
© UCL

North East and Cumbria Transport and Retrieval (NECTAR) is an adult and paediatric critical care transfer service involved in providing transfer to hospital for patients with learning disabilities. In this article, Dr Andora Holden (Clinical Fellow in Transfer Medicine, NECTAR) and Dr Tom Payne-Doris (Consultant in Intensive Care Medicine and Lead Consultant for NECTAR (Adults)), describe facilitating the transfer of people with learning disabilities to access basic hospital care.

People with learning disabilities may require healthcare investigations, treatments and interventions which, due to difficulties in comprehension, preferences or behavioural needs and characteristics, may be less easily accessible.

Usual methods for facilitating access to healthcare are likely to fail, as standard systems and processes may not have been designed with additional needs in mind. Where this is the case, it is important for a multidisciplinary approach to be used in order to make otherwise inaccessible services available.

Approximately one million adults in the UK have a learning disability. On average, in 2021 they died over twenty years earlier than those who did not have a learning disability – and this was often from a health problem that could have been treated.

Challenges & Hurdles

  • All interested parties must be involved in planning the transfer:
  1. Learning disability specialist nurses are instrumental in the process and act as advocates for the patient.
  2. Other staff involved may include hospital anaesthetists, surgeons and the patient’s GP, as well as pharmacists and administrative staff.
  3. The patient (if possible), patient’s relatives and/or carers are crucial to this process.
  • The plan must be made in the best interests of the patient. Where the patient is opposed to treatment, would be subject to deception or coercion, or there is disagreement between the involved parties (as to what is in the patient’s best interests or as to whether the patient has mental capacity to make decisions), then the case must be referred to the Court of Protection.

Logistics

  • In addition to planning meetings, a home visit prior to the transfer is made to ensure that any hazards or issues are identified and planned around.
  • Any equipment or medications required which are not routinely carried by the service must be obtained prior to the transfer.
NECTAR Consultant dressed as the patient’s favourite character, Naughty Norman.

Solutions & Methods

  • The home visit provides the opportunity to develop rapport, assess the patient, assess mental capacity and further identify any values, wishes and beliefs.
  • Providing sedation in the patient’s own home facilitates transfer to hospital whilst minimising distress and disruption to the patient. Careful planning to complete any additional tests or interventions concurrently will also save a disruptive repeat process.
  • Once under anaesthesia, the patient can receive the required interventions at the hospital prior to transfer home where the recovery process is completed.
Understanding the patient’s routine, likes and dislikes is crucial to ensuring that the process runs as smoothly as possible. Other useful measures include ensuring patient-familiar people are involved, using soft/gentle voices, avoiding uniforms (where patients have a dislike to this), providing entertainment, decorating the ambulance and avoiding busy areas of the hospital.
  • Planned transfers are more akin to elective theatre cases than the majority of adult critical care transfers; it is therefore imperative that planning and preparation is thorough as there is minimal opportunity to receive additional support or access additional equipment once in the patient’s own home. This is further complicated by there being no opportunity to perform a full pre-operative (WHO-style) checklist with the patient, so checks must be completed prior to delivery of sedation, followed by subsequent clinical assessment.

Case Studies

1. An adolescent female requires an amputation of her foot as a result of osteomyelitis.
Extensive discussions were necessary regarding this best interests decision, owing to the significance of disability post-operatively, balanced against the risks of leaving a major infection untreated. The plan was to attempt to sedate the patient with medication rubbed into the inside of the cheek (buccal midazolam) but the patient refused this, became distressed and locked the door. Alternative access to the property was gained and a sedative (ketamine) was given by injection (intramuscular). Intravenous access was gained and further propofol sedation given. She was given oxygen en route to the hospital and anaesthetised and intubated on arrival to theatres so that the amputation could be completed.
2. An elderly gentleman with a positive bowel cancer screening test needs further investigation with a CT scan.
He usually uses a nasal spray in the morning, so his carer was able to administer an intranasal sedative medication (dexmedetomidine), causing minimal disruption to his own routine, whilst the NECTAR Consultant watched from a distance to observe the effects. With additional ketamine delivered intramuscularly, he was subsequently anaesthetised in the ambulance for transfer. He was also given a vaccination whilst anaesthetised, minimising further distress. Following completion of the planned interventions he was transported home and recovered there with one of his usual carers present.

These cases highlight the need for a personalised approach – that has been carefully planned – but which maintains a degree of flexibility throughout.

Delivery of such a service by critical care transfer teams is appropriate because of the skill set of the staff, availability of transport and the ability to work in remote environments – yet this is not a service routinely commissioned by NHS England. If provision of transfer services like this were to change in the future it would enable more patients – more people – to have equity of access to healthcare.

Do you have a similar service where you work? What if you don’t? Please share your experiences below.

REFERENCES

© UCL
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A Journey Through Transfer Medicine

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