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NATIONAL INSTITUTE FOR HEALTH AND CARE
EXCELLENCE
Health and social care directorate
Quality standards and indicators
Briefing paper
Quality standard topic: Parkinson’s disease
Output: Prioritised quality improvement areas for development.
Date of Quality Standards Advisory Committee meeting: 1 st^ June 2017
Contents
1 Introduction .......................................................................................................... 2
2 Overview .............................................................................................................. 2
3 Summary of suggestions ..................................................................................... 9
4 Suggested improvement areas .......................................................................... 12
Appendix 1: Review flowchart .................................................................................. 40
Appendix 2: Suggestions from stakeholder engagement exercise – registered
stakeholders .......................................................................................... 41
1 Introduction
This briefing paper presents a structured overview of potential quality improvement areas for Parkinson’s disease. It provides the committee with a basis for discussing and prioritising quality improvement areas for development into draft quality statements and measures for public consultation.
1.1 Structure
This briefing paper includes a brief description of the topic, a summary of each of the suggested quality improvement areas and supporting information.
If relevant, recommendations selected from the key development source below are included to help the committee in considering potential statements and measures.
1.2 Development source
The key development sources referenced in this briefing paper is:
Parkinson’s disease in adults: diagnosis and management. NICE guideline 69 (publication expected June 2017)
Parkinson’s disease NICE clinical knowledge summary (2016)
2 Overview
2.1 Focus of quality standard
This quality standard will cover the diagnosis and management of Parkinson’s disease in adults.
2.2 Definition
Parkinson’s disease is a progressive neurodegenerative condition in which parts of the brain become progressively damaged over many years. There is no consistently reliable test that can distinguish Parkinson’s disease from other conditions that have a similar clinical presentation. The diagnosis is primarily based on a clinical history and examination.
People with Parkinson’s disease classically present with the symptoms and signs described as ‘parkinsonism’: these include bradykinesia (slow movements), rigidity, rest tremor (shaking) and postural instability (loss of balance). The symptoms of parkinsonism are not always a result of Parkinson’s disease. Other causes include side effects of medicines, vascular disease, and less common degenerative conditions.
which concentrates on self-management, will have a part to play for some individuals.
2.5 National audit
The UK Parkinson’s Excellence Network Parkinson’s Audit^1 is a national audit of the quality of care provided to people with Parkinson’s disease benchmarked against good practice standards and guidance including the 2006 NICE guideline. It includes separate service audits for Elderly Care and Neurology consultants, Parkinson’s nurses, occupational therapists, physiotherapists and speech and language therapists. The 2015 audit reports on the care provided by 432 participating services to 8,846 people with Parkinson’s. The audit was designed to examine how patients had been managed and assessed over the previous year rather than on a single visit. In addition to the audit data, 5,834 people with Parkinson’s and their carers attending 225 of the participating services completed a patient reported experience measure (PREM) questionnaire. These are not necessarily the same patients as those included by the services in their patient audit.
2.6 Resource impact
We do not expect any of the suggested areas for quality improvement to have a significant impact on resources. Resource impact work performed during development of NICE guideline 69 suggested that implementing the guideline would cost less than £1m in England annually for a single guideline recommendation and less than £5m in England across the whole guideline.
2.7 National outcome frameworks
Tables 1–3 show the outcomes, overarching indicators and improvement areas from the frameworks that the quality standard could contribute to achieving.
Table 1 NHS outcomes framework 2016– 17 Domain Overarching indicators and improvement areas 2 Enhancing quality of life for people with long-term conditions
Overarching indicator 2 Health-related quality of life for people with long-term conditions** Improvement areas Ensuring people feel supported to manage their condition 2.1 Proportion of people feeling supported to manage their condition Reducing time spent in hospital by people with long-term conditions Enhancing quality of life for carers
(^1) 2015 UK Parkinson’s Audit UK Parkinson’s Excellence Network (2016)
2.4 Health-related quality of life for carers** 3 Helping people to recover from episodes of ill health or following injury
Overarching indicators 3b Emergency readmissions within 30 days of discharge from hospital* Improvement areas Improving outcomes from planned treatments 3.1 Total health gain as assessed by patients for elective procedures i Physical health-related procedures ii Psychological therapies iii Recovery in quality of life for patients with mental illness Helping older people to recover their independence after illness or injury 3.6 i Proportion of older people (65 and over) who were still at home 91 days after discharge from hospital into reablement/rehabilitation service* 4 Ensuring that people have a positive experience of care
Overarching indicators 4a Patient experience of primary care i GP services 4b Patient experience of hospital care 4c Friends and family test 4d Patient experience characterised as poor or worse I Primary care ii Hospital care Improvement areas Improving people’s experience of outpatient care 4.1 Patient experience of outpatient services Improving hospitals’ responsiveness to personal needs 4.2 Responsiveness to inpatients’ personal needs Improving the experience of care for people at the end of their lives 4.6 Bereaved carers’ views on the quality of care in the last 3 months of life Improving people’s experience of integrated care 4.9 People’s experience of integrated care** 5 Treating and caring for people in a safe environment and protecting them from avoidable harm
Overarching indicators 5b Severe harm attributable to problems in healthcare
Alignment with Adult Social Care Outcomes Framework and/or Public Health Outcomes Framework
- Indicator is shared ** Indicator is complementary Indicators in italics in development
3 Ensuring that people have a positive experience of care and support
Overarching measure People who use social care and their carers are satisfied with their experience of care and support services 3A Overall satisfaction of people who use services with their care and support 3B Overall satisfaction of carers with social services Placeholder 3E The effectiveness of integrated care Outcome measures Carers feel that they are respected as equal partners throughout the care process 3C The proportion of carers who report that they have been included or consulted in discussions about the person they care for People know what choices are available to them locally, what they are entitled to, and who to contact when they need help 3D The proportion of people who use services and carers who find it easy to find information about support People, including those involved in making decisions on social care, respect the dignity of the individual and ensure support is sensitive to the circumstances of each individual This information can be taken from the Adult Social Care Survey and used for analysis at the local level. 4 Safeguarding adults whose circumstances make them vulnerable and protecting from avoidable harm
Overarching measure 4A The proportion of people who use services who feel safe** Outcome measures Everyone enjoys physical safety and feels secure People are protected as far as possible from avoidable harm, disease and injuries People are supported to plan ahead and have the freedom to manage risks the way that they wish 4B The proportion of people who use services who say that those services have made them feel safe and secure Alignment with NHS Outcomes Framework and/or Public Health Outcomes Framework
- Indicator is shared ** Indicator is complementary Indicators in italics in development
Table 3 Public health outcomes framework for England, 2016– 2019 Domain Objectives and indicators 2 Health improvement Objective People are helped to live healthy lifestyles, make healthy choices and reduce health inequalities 2.23 Self-reported well-being 2.24 Injuries due to falls in people aged 65 and over 4 Healthcare public health and preventing premature mortality
Objective Reduced numbers of people living with preventable ill health and people dying prematurely, whilst reducing the gap between communities Indicators 4.11 Emergency readmissions within 30 days of discharge from hospital* 4.13 Health-related quality of life for older people 4.14 Hip fractures in people aged 65 and over Alignment with Adult Social Care Outcomes Framework and/or NHS Outcomes Framework
Table 4 Summary of suggested quality improvement areas
Suggested area for improvement Stakeholders
Referral to a specialist ABUHB, BP. RCGP, SCMs
Specialist support Key contact Multidisciplinary team
RCGP, RCOT, SCMs ABUHB, AGILE, PA, PUK/CRGN, RCN, RCOT, SCMs, SRR, WH Care management Care plan Reviews
BP, SCMs PA, RCGP, WH Identifying symptoms and complications Assessment
Impulse control disorders
ABUHB, PA, PUK/CRGN, RCPsy, SCM, SRR, WH RCPsy, SCMs Treatment for symptoms Pharmacological management Deep brain stimulation
SCMs ML, PUK/CRGN, RCN Medicines management in hospital PUK/CRGN,SCMs Information and support Information for the person with Parkinson’s disease Information and support for carers
BP, PA, PUK/CRGN, SCMs, WH
PUK/CRGN, RCOT, SCM, SRR Additional areas Planning for end of life Employment support Data collection NHS Continuing healthcare system
CiD, PUK/CRGN, RCN, RCOT SRR PA, WH SCM ABUHB, Abertawe Bromorgannwg University Health Board AGILE, AGILE (Subgroup of Chartered Society of Physiotherapy) BP, Britannia Pharmaceuticals CiD, Compassion in Dying ML, Medtronic Ltd PA, Parkinson’s Academy PUK/CRGN Parkinson’s UK and Clinical Reference Group for Neurosciences (including Association of British Neurologists Advisory Group in Movement Disorders) RCGP, Royal College of General Practitioners RCOT, Royal College of Occupational Therapists RCN, Royal College of Nursing RCPsy Royal College of Psychiatrists SCM, Specialist Committee Member SRR, Society for Research in Rehabilitation WH, Wilmington Healthcare
3.2 Identification of current practice evidence
Bibliographic databases were searched to identify examples of current practice in UK health and social care settings; 509 papers were identified for Parkinson’s disease. In addition, 39 papers were suggested by stakeholders at topic engagement.
Of these papers, 11 have been included in this report and are included in the current practice sections where relevant. Appendix 1 outlines the search process.
being referred to a neurological specialist. The survey included 592 people with Parkinson’s disease within a larger sample of neurology patients.
4.2 Specialist support
4.2.1 Summary of suggestions
Key contact
Stakeholders suggested that people with Parkinson’s disease should have a case manager with specialist expertise, such as a Parkinson’s disease nurse or specialist healthcare professional. This will ensure that their needs are proactively reviewed and managed, that they can access services and therapies and support to help them to manage their condition. The specialist case manager can refer the person back to the consultant when required. It was reported that there is currently variability in access to nurse specialists even though stakeholders highlighted that the service may lead to cost savings.
Multidisciplinary team
Stakeholders highlighted that people with Parkinson’s disease should be able to access support from a multidisciplinary team to help them to manage their symptoms, maintain their independence and avoid hospital admissions. Some stakeholders emphasised the importance of the multidisciplinary team as a whole while others felt the quality standard should focus on access to specific services. The composition of the multidisciplinary team will vary depending on individual needs but stakeholders suggested it may include:
consultant neurologist/geriatrician with special interest Parkinson’s disease nurse physiotherapist (including advice on physical activity) occupational therapist speech and language therapist (including assessment of communication needs at diagnosis and access to Lee Silverman Voice Therapy) falls prevention service psychological support including neuropsychology (following diagnosis and for mental health problems) dietitian pharmacist social care GP with knowledge of Parkinson’s
a reliable source of information about clinical and social matters of concern to people with Parkinson’s disease and their family members and their carers (as appropriate),
which may be provided by a Parkinson’s disease nurse specialist. [2006]
Multidisciplinary support
Non-pharmacological management of motor and non-motor symptoms
NICE NG69 Recommendation 1.7.
Consider referring people who are in the early stages of Parkinson’s disease to a physiotherapist with experience of Parkinson’s disease for assessment, education and advice, including information about physical activity. [2017]
NICE NG69 Recommendation 1.7.
Offer Parkinson’s disease-specific physiotherapy for people who are experiencing balance or motor function problems. [2017]
NICE NG69 Recommendation 1.7.
Consider referring people who are in the early stages of Parkinson’s disease to an occupational therapist with experience of Parkinson’s disease for assessment, education and advice on motor and non-motor symptoms. [2017]
NICE NG69 Recommendation 1.7.
Offer Parkinson’s disease-specific occupational therapy for people who are having difficulties with activities of daily living. [2017]
NICE NG69 Recommendation 1.7.
Consider referring people who are in the early stages of Parkinson’s disease to a speech and language therapist with experience of Parkinson’s disease for assessment, education and advice. [2017]
NICE NG69 Recommendation 1.7.
Offer speech and language therapy for people with Parkinson’s disease who are experiencing problems with communication, swallowing or saliva. This should include:
strategies to improve the safety and efficiency of swallowing to minimise the risk of aspiration, such as expiratory muscle strength training (EMST)
strategies to improve speech and communication, such as attention to effort therapies. [2017]
NICE NG69 Recommendation 1.7.
Consider referring people with Parkinson’s disease to a dietitian for specialist advice. [2017]
NICE CKS Parkinson’s disease - Confirmed Parkinson’s disease/Routine review in primary care
A person with confirmed Parkinson's disease should be under the care of a specialist in movement disorders and a multidisciplinary team including a Parkinson's disease nurse, who can advise on management issues and provide ongoing support.
NICE CKS Parkinson’s disease - Confirmed Parkinson’s disease/Motor symptoms and complications
Most people with Parkinson's disease will be managed by a specialist in movement disorders and/or a multidisciplinary team including a Parkinson's disease nurse, physiotherapist, and occupational therapist, who can advise on the management of motor symptoms and complications.
NICE CKS Parkinson’s disease - Confirmed Parkinson’s disease/Non-motor symptoms and complications
Most people with Parkinson's disease will be managed by a specialist in movement disorders and/or a multidisciplinary team including a Parkinson's disease nurse, who can advise on the management of non-motor symptoms and complications.
4.2.3 Current UK practice
Key contact
The 2015 UK Parkinson’s audit^3 reported that 94.1% of people with Parkinson’s could access a Parkinson’s nurse, although 7/129 elderly care and 5/110 neurology services had no access to a Parkinson’s nurse. 74.6% of people with Parkinson’s responding to the PREM survey agreed that they could contact their Parkinson’s nurse for advice between review appointments.
Multidisciplinary team
The 2015 UK Parkinson’s audit indicated that only 13% of services were able to offer a fully integrated clinic model with access a consultant, a nurse specialist and other key professionals such as a physiotherapist. Only 50% of patients were referred to a
(^3) 2015 UK Parkinson’s Audit UK Parkinson’s Excellence Network (2016)
4.3 Care management
4.3.1 Summary of suggestions
Care plan
It was suggested that people with Parkinson’s disease should have an up to date, jointly agreed personal care plan covering their health and social care needs. This can empower the person with Parkinson’s disease and their carers to take control of their care and will support a shared understanding across services of how the person wants to manage their condition.
Reviews
Stakeholders identified the importance of ensuring that people with Parkinson’s disease have regular reviews to monitor their condition and identify any additional support required. A stakeholder suggested that the review should be carried out by a specialist such as a neurologist, care of the elderly physician or Parkinson’s disease nurse.
4.3.2 Selected recommendations from development source
Table 7 below highlights recommendations that have been provisionally selected from the development sources that may support potential statement development. These are presented in full after table 7 to help inform the committee’s discussion.
Table 7 Specific areas for quality improvement Suggested quality improvement area
Selected source guidance recommendations Care plan Communication with people with Parkinson’s disease and their carers NICE NG69 Recommendation 1.1. Reviews Diagnosing Parkinson’s disease NICE NG69 Recommendation 1. 2. Pharmacological management of non-motor symptoms NICE NG69 Recommendation 1.5.
NICE CKS Parkinson’s disease - Confirmed Parkinson’s disease/Routine review in primary care
Care plan
Communication with people with Parkinson’s disease and their carers
NICE NG69 Recommendation 1.1.
People with Parkinson’s disease should have a comprehensive care plan agreed between the person, their family members and carers (as appropriate), and specialist and secondary healthcare providers. [2006]
Reviews
Diagnosing Parkinson’s disease
NICE NG69 Recommendation 1.2.
Review the diagnosis of Parkinson’s disease regularly, and reconsider it if atypical clinical features develop. (People diagnosed with Parkinson’s disease should be seen at regular intervals of 6–12 months to review their diagnosis.) [2006]
Pharmacological management of non-motor symptoms
NICE NG69 Recommendation 1.5.
At least every 12 months, a healthcare professional with specialist expertise in Parkinson’s disease should review people with Parkinson’s disease who are taking modafinil. [2017]
NICE CKS Parkinson’s disease - Confirmed Parkinson’s disease/Routine review in primary care
Ensure the person has a comprehensive review of all aspects of their care at least every 6–12 months.
4.3.3 Current UK practice
Care Plan
A House of Commons Committee report on services for people with neurological conditions^4 concluded that people with neurological conditions may not be offered a personalised care plan based on the following evidence:
the 2015 GP Patient Survey suggested that only 12% of people with a neurological condition have a written care plan
(^4) Services to people with neurological conditions: progress review House of Commons Committee of Public Accounts Twenty-fourth Report of Session 2015– 16
