Table of contents

Unmet needs and service gaps

Adults :: Long term neurological conditions :: Unmet needs and service gaps

• At present on person from the Huntington's Disease Association works across Kent, Sussex, Bromley, Bexley and Dartford as a non-medical advisor, but given the limited resources of one individual, it is not possible to support all people with HD in Medway, nor provide a service whereby she proactively contacts people on a regular basis.

• There is no GP with a Special Interest in neurology in Medway, resulting in frequent referrals to specialist nurses and consultant neurologists

• Provision of an epilepsy specialist nurse is limited with the one clinic a week in Medway being run by an ESN from Darent Valley Hospital.

Services in development

• Community neuro–rehabilitation pathway: MCH is in the early stages of developing a community pathway to ensure people with LTNCs receive the right therapy from the right provider and to minimise duplication. This will create a single point of access for patients who will have their treatment or rehabilitation plan coordinated and supported.

• Case management approach: MCH is liaising with the CCG regarding the restructuring of its services into a case management approach in order to give a holistic overview of complex cases.

• Shared electronic patient record: this is being developed by MCH to contain MyPlan, which is filled in as part of an assessment and contains an individuals care plan, treatment and goals, which could then be viewed by all MCH services.

• Proposed neuro rehabilitative palliative care service: A business case has been developed for a neuro rehabilitative palliative care service, comprising a doctor, community nurse, neuro nurse, physio, counsellor/social worker, speech and language therapist and OT. Having such a team in place would enable more regular visits to places such as Millstream and Frindsbury care homes, which provide support for patients with advanced HD. The team would also work with the MS specialist nurse to proactively identify and assess patients whose condition is deteriorating, and with the PD specialist nurse to support patients with MSA/PSP. This team could also be tasked with identifying the small numbers of people with rarer LTNCS that exist in the community. It was estimated that there are 20–30 people with these conditions in Medway and almost no expertise to cover them currently.