By Dr Kristina Lauckaite, Consultant Neurologist, Queen Elizabeth The Queen Mother Hospital

Parkinson’s Advanced MasterClass 36A, November 2019

Aim and objectives

Taking part in Parkinson’s UK 2019 National Audit gives an overview of the current Parkinson’s services available in the East Kent area, objective measures about the quality of these services and, most importantly, the experience reported by patients who have been using these services. This is vital information before outlining strategic objectives and planning priority areas which require improvement. There are already established services in the East Kent area providing services to patients with neurological conditions. However we must ensure that we are familiar with these services ourselves, that there are no communication issues between the services, the services are accessible, personalised, holistic and supportive, and patients do not get lost in the system. This forms a working document from which we can start a new cycle of Parkinson’s service implementation.

Current situation of Parkinson’s service at East Kent Hospitals University Foundation Trust

East Kent Hospitals University Foundation Trust (EKHUFT) is one of the largest Trusts in England, with five hospitals and community clinics serving a local population just under 700 000 people. EKHUFT has five hospitals: Queen Elizabeth the Queen Mother Hospital (Margate), Buckland Hospital (Dover), Kent and Canterbury Hospital (Canterbury), William Harvey Hospital (Ashford), Royal Victoria Hospital (Folkestone, Herne Bay). The East Kent Neuroscience Unit (EKNU) is at the Kent and Canterbury Hospital. Out-patient Facilities for patients with Parkinson’s and related movement disorders clinics are held at: William Harvey Hospital, Ashford, Buckland Hospital, Dover Deal Hospital, Kent and Canterbury Hospital, Canterbury, Faversham Health Centre, Royal Victoria Hospital, Folkestone, Royal Victoria Hospital, Herne Bay, Queen Elizabeth the Queen Mother Hospital, Margate. Our specialist nurses also visit patients at home.
Currently Parkinson’s service at EKHUFT is provided by: 12 neurology consultants, 6 Parkinson’s specialist nurses, 4 HCOOP (Elderly care) consultants, 2 Occupational Therapists, 2 specialised Neuro-Physiotherapists, Speech and Language Therapists. East Kent Neuropsychiatry Service is a tertiary neuropsychiatry outpatient service (provided by Kent and Medway Trust) offering assessment and treatment to adults living in the Eastern and Coastal areas of Kent. Neuropsychiatry service offers multidisciplinary (neuropsychiatry, clinical psychology, neuropsychology, nursing) assessment and treatment for adults aged 18+. Assessment and treatment is based on an individual’s needs and treatment plan, but may include drug therapy, short-term psychological therapy interventions and assessment of cognitive abilities. As a tertiary service, the team provides care for individuals whose complex needs cannot be met within primary or secondary care services. Furthermore East Kent has access to tertiary beds at the Regional Neuroscience Centre at King’s College Hospital, Denmark Hill, London, and maintains strong clinical and academic links over neurological sub-specialties, as well as over neuroradiology, neurosurgery, neuropathology, and 24/7 neurology and neurosurgery advice is available from King’s.

Socio-demographic characteristics and challenges of East Kent population

There are some challenges providing care closer to patients’ home in a large geographical area of Kent. With a resident population of 1,568,600 Kent has the largest population of all the English counties. People living in urban areas make up 74% of the Kent population but they only occupy 23% of the total land area, therefore Kent is sometimes called a garden of England. Over the past 10 years Kent’s population has grown by 10.4%. Kent’s population is forecast to increase by a further 19.2% between 2017 and 2037. Kent has an aging population. The mean age of resident in the Kent is 40.9 years which is slightly higher than the national average of 39.8 years. Kent does have a greater proportion of people aged 45+ years than the England average. Just under a fifth of Kent’s population is of retirement age (65+). Forecasts show that the number of 65+ year olds is forecast to increase by 53.1% between 2017 and 2037, yet the proportion of population aged under 65 is only forecast to increase by 10.7% [1, 2]. Because of population growth and an increasingly ageing population, the estimated prevalence and incidence of Parkinson’s in Kent is expected to grow. Presumably there are about 1400 or higher number of Parkinson’s cases in East Kent.

Furthermore, there are additional socio-demographic challenges especially in the coastal areas of East Kent. Thanet has the highest unemployment rate at 5.3%. This is above the rate for United Kingdom (2.8%). Thanet has the highest 18-24 year old unemployment rate in the South East at 8% [1]. Besides, this area has higher prevalence of learning disabilities and dementia. It is predicted by calculating Mental Health Needs Index 20% increment of mental health illness needs especially in East Kent coastal areas than in the country as a whole (Source: MINI) [2].

What we have learned from Parkinson’s UK 2017 National Audit

EKHUFT participated in Parkinson’s UK 2017 National Audit (patient n=21, PREM n=34 for neurology services only) and the individual service report showed that: 

(a) Based on the Service Audit part – we were underperforming in comparison to the national average in most of the items;

(b) Based on the Patient Audit Part EKHUFT was meeting the standards and is either at or above the national average;

(c) Based on the Patient Reported Experience Measure part of the audit – we were underperforming in some areas:

  • Re the role of social workers and other professionals who support people with Parkinson’s
  • Re support for carers
  • Re discussions about End of life care (0%)
  • Re how to access Parkinson’s UK support services
  • Re when being prescribed new medication patients feel given enough information, including potential side effects
  • Re thinking back to when diagnosed patients were given enough information about Parkinson’s
  • Re patients were not able to access OT despite tried, generally lower number of PT access
  • Re generally high percentage (35.3% vs. national average 37.4%) of no information how to take part in clinical trials
  • Re frequently not being asked about balance and falls.

Following the 2017 audit, service improvement plan was drafted with the main aims and responsible persons to improve information at diagnosis and signposting to information  re support worker and access to relevant financial benefits, consistently address bone health, improve opportunity to discuss end of life issues/advanced care planning, improve access to therapies for patients and staff.

Lessons from the National Neurology Patient Experience Survey 2018-2019

The Neurological Alliance is an umbrella body for 80 organisations which is a significant neurological patient’s voice providing feedback about access and quality of the services. The National Neurology Patient Experience Survey presents a comprehensive picture of the experiences of people living with a neurological condition in England. The survey has been run biennially by The Neurological Alliance since 2014. The full survey roll-out took place in select neurology clinics and online, from July 2018 to March 2019. It received 10,339 responses covering three main themes – accessible, personalised and holistic care and support (which include social care, mental health and financial security) [3].

Care and support for people with neurological conditions must be:

  • Accessible:

1. A national neurology plan for England should be urgently developed to address delays in the system and regional variation in access to services.

2. Sustainability and Transformation Partnerships/Integrated Care Systems should include neurology as a priority area for improvement in their plans; especially in areas where patient experience is consistently lower than the national average.

  • Personalised:

3. Person centred care should be provided to all people with neurological conditions through delivering the commitment to personalised care contained in the Long Term Plan for the NHS, especially in relation to information provision at the time of diagnosis and care planning.

  • Holistic:

4. People with neurological conditions should be afforded the opportunity to live dignified, fulfilled lives, maximising their wellbeing through:

Resolution of the social care crisis including

  • a long-term funding settlement
  • b Redoubling efforts to tackle structural and institutional barriers to employment
  • c Reform to the welfare system in line with the Disability Benefits Consortium’s calls

5. Neurology should be prioritised for mental health improvement initiatives aimed at people with long term conditions such as the commitments made in the Long Term Plan for the NHS [3].

The 2018-19 results show that people’s experiences remain poor [3]. This year the results are also broken down to regional level which is possible to access online using an interactive map which shows the patient experience survey scores for each Sustainability and Transformation Partnership footprint, revealing wide regional variation in the experience of people with neurological conditions. Unfortunately, Kent and Medway area is below England average in most of domains.  With the number of neurological cases in England estimated to be 12.5 million, the Neurological Alliance is now calling for neurology to be prioritised within the NHS and for opportunities to be seized to improve the system [3].

Current quality improvements achieved or in process at EKHUFT

Service improvement plan presents an opportunity to meet the needs of patients more effectively than at present, whilst achieving better value for money. There are a few recent implementations made in care of patients with Parkinson’s at EKHUFT:

•   Careflow – a program and mobile app using SBAR approach (Situation, Background, Assessment, and Recommendation) allowing every referral to be made electronically, instantly in order every consultant, registrar, specialist nurse could see and act upon request without any delays and allows better communication between all service providers.

•   New voice recognition system (since Sept 2019) – allowing insertion of snippets into every clinical letter –including signposting, guidance for more information and support at Parkinson’s UK and other organisations, professional patients program, information for carers, entitlement to financial benefits, DVLA guidance, etc. We hope that Parkinson’s patients will feel more empowered, with increased knowledge about their condition and signposting to valuable resources, understanding how to navigate the system and better management. Besides it decreased some beaurocratic burden to consultants and specialist nurses.

•   Staff changes – increasing number of consultants with permanent job posts, OT colleagues and Parkinson’s disease nurses. This now allows neurology movement disorder clinic in each main sites (Ashford, Canterbury, Margate) covering large geographic area, a better access to services, service delivered closer to patient’s home and continuity of care. With this change hopefully patients will feel less isolated and will be able to manage their condition better in the community.

•   Radiology Movement disorders Multidisciplinary (MDT) meetings – these are due to start on 19th November 2019 across each site of EKHUFT including VC. MDT working will ensure patients are able to step up and step down through the system when needed. The intention is to establish a regular imaging meeting to predominantly review complex or uncertain cases that would benefit from a MDT meeting discussion. This plan for movement disorder patient’s quality improvement was initiated by HCOOP colleagues (Lead Dr Jonathon Hawkins).  Initially we plan to start small, with Nuclear Medicine and Consultant Neurology and HCOOP meeting. At a later stage to open this to others once we have established format and process.

•   Future participation in Parkinson’s UK National Audit – with an aim to enrol all members involved in Parkinson’s care at EKHUFT in order to collect more accurate and representative data, to educate colleagues, achieve better communication and team working, to find potential areas of future improvement in order to meet patients’ needs.

Emerging needs and tasks for improvement from Parkinson’s UK 2019 National Audit preliminary data

EKHUFT participated in Parkinson’s UK 2019 National Audit. The deadline for submission was 31st Oct 2019 which we met. The individual service report is due in January 2020. In this round our involvement was bigger than the last round (2017). The data we submitted is as following:

  • Neurology – 53 patient cases, service data, 43 Patient Reported Experience Measure (PREM) questionnaires;
  • Elderly Care – 40 patient cases, service data, 15 PREM;
  • Physiotherapy – 20 patient cases, service data;
  • Occupational therapy – 10 patient cases, service data.

Despite we do not have yet precise report, we can already notice some emerging areas for further improvement:

  • Clozapine pathway – there is no official pathway yet for prescription and monitoring at EKHUFT.
  • Not all consultants providing medical input to this service attended Movement Disorder specific external CME in the last 12 months (currently reported 5 /12 (41.7%) 2019)
  • Integrated clinics (MDT) instead of Joint/parallel or Consultant working alone clinics – currently in process
  • Improvement in use of standardised Assessment Tools (e.g. formal ADL assessment tool or check list used when Parkinson’s patients are reviewed in this service). We need to discuss the need for base line scores and assessment tools to monitor patient condition (supply some of the questionnaires to be completed and brought to the next appointment). To make standardised pre-clinic questionnaires.
  • Raise End of Life considerations when appropriate – Power of attorney, Wills, Options for care if needed.
  • Consistent assessments of bone health and falls. EKHUFT has a specialised Falls clinic, however we need to be vigilant with every patient.

References

  1. Kent County Council, ONS – Office for National Statistics, Business Intelligence Statistical Bulletin June 2017. Based on 2016 Mid Year Population Estimates, ONS, Kent County Council , Jun 2017 ; www.kent.gov.uk/research
  2. Kent Public Health Observatory, SEPHO, ONS, MINI http://atlas.kpho.org.uk
  3. The Neurological Alliance. www.neural.org.uk/patient-experience-survey, https://2019survey.neural.org.uk/