Not NICE enough

Healthwatch Staffordshire carried out an in-depth qualitative study to capture the stories and experiences of people with MS, Parkinson’s and MND. The study follows on from the findings of phase 1 of the research which took place in 2016 – a large-scale Neurological Survey conducted across Staffordshire and Stoke on Trent conducted by Healthwatch Staffordshire, Healthwatch Stoke-on-Trent and the Staffordshire Neurological Alliance. The phase 1 survey identified some large gaps in services, particularly amongst people with MS, MND and Parkinson’s.

The overall objective of this phase 2 study was to identify gaps, inconsistencies and best practice in the care and treatment of MS, MND and Parkinson’s across each CCG area in Staffordshire. This information could help to specify where the pathways were failing and identify what areas needed improvement to develop a more effective, affordable model of care within the current health and care economy.

A total of 52 participants were interviewed (using semi-structured interviews) for this research: 24 participants with MS, 19 participants with Parkinson’s and 9 participants with MND.

The key findings of the report were:

- Of the three conditions, the treatment of Parkinson’s across Staffordshire and Stoke-on-Trent was most in line with NICE guidelines.

- Palliative care discussions, delays in referrals, specialist services and equipment have been reported to be the most common issues for people with the three conditions across the region.

- Parkinson’s care and treatment ranks positively in providing regular access to specialist nursing care, for diagnosis and expert review but is lower in areas such as quick referrals to neurologists for diagnosis, access to physiotherapy and palliative care discussions.

- MS care and treatment is reported to be positive in areas such a comprehensive review of the condition and in managing relapses but lacks provision of support during diagnosis, and lacks consistent follow-up after diagnosis.

- MND care and treatment is the most varied and inconsistent of the three conditions. MND ranks highly in symptom monitoring but lacks consistency in providing information, provision of equipment without delay, exercise programmes, psychological support and palliative care discussions.

The report made four recommendations:

1) Managing expectations with NICE guidelines: Patients should be provided with an information pack that has relevant contacts and up-to-date information, as well as a NICE guidance tick sheet (covering expected pathway, approximate waiting times, etc.) after their diagnosis. This will help to provide clarity for patients who do not know what to expect for the length of their condition.

2) Support during diagnosis and while waiting for a diagnosis: Patients should be provided with support during diagnosis and whilst waiting for diagnosis. This could include the presence of a family member or a specialist nurse during diagnosis, collaborations with the MND association, MS society and Parkinson’s support groups to provide an additional contact point for support, and also an online portal to identify at what stage of diagnosis their neurologists are and how long they have to wait before a diagnosis.

3) Lack of specialist staff: Additional specialist nurses should be recruited as well as rehabilitation and occupational therapists (to support mobility and independence) who are able to travel to patients’ homes.

4) Reducing waiting times for referral: The waiting time between presenting to the GP and being referred to a neurologist could be reduced by using a Red Flag Tool (developed by the MND Association). The tool aims to help GPs decide if the patient’s symptoms are isolated or an indication of a wider neurological condition.