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In July this year, the All Party Parliamentary Group for Parkinson’s disease published its report, “Please mind the gap - Parkinson’s disease services today”.¹

This came after a comprehensive inquiry into inequalities of access to services for people with Parkinson's and their carers. On the same day the Parkinson's Disease Society (PDS) also launched their ‘Fair Care for Parkinson's’ campaign², calling for the Government to ensure that the APPG report recommendations are implemented. Although the number of Parkinson’s sufferers is estimated at 120,000 in the UK, the report says that one eighth of the population is directly affected by the disease through family and close friends.

The report is based on written and oral evidence from people with Parkinson’s disease (PD) and their carers, professionals, government representatives and a range of organisations. It highlights significant problems with service provision, and major inequalities in access to information and services for people with Parkinson's and their families, despite numerous existing guidelines across the UK.

Current experience
Access to medical specialists - The report says diagnostic error can be as high as 50 per cent in Parkinson’s disease and accurate diagnosis relies on experience and expertise of the physician. In particular, it noted there were no specialists in post with expertise in Parkinson’s disease in Northern Ireland, while other areas also had significant problems.

Parkinson’s disease nurse specialists - The inquiry found that the patients particularly value specialist nurses for their role as the regular point of contact for most aspects of care i.e. advice, adjustment of medication, community and outreach services. The Welsh Neurological Alliance had reported that some people in Wales have no access to specialist PD nurse services at all. Patients in Northern Ireland and Scotland, and to a lesser degree England, were reported as also having problems accessing a specialist PD nurse service

Therapy services - Access to secondary prevention with intervention such as physiotherapy, speech and language therapy was poor, especially for people living further away from major hospital centres or who have mobility or transportation restrictions. The report noted that “patients only received short spells of therapy despite the chronic nature of their problems”. Some never had assessments for therapy services, others had lengthy waiting times. In some areas voluntary services were filling the gaps.

Mental health services - Although psychiatric co-morbidity is high in Parkinson’s disease i.e. dementia in one third, depression affecting up to half, the inquiry has revealed that “less than one in eight people with Parkinson’s disease have ever received an assessment or course of treatment in connection with their Parkinson’s disease from a mental health professional”.

Surgery - The report highlights the limited access to deep brain stimulation surgery in Wales due to restrictions to the annual budget allocations. It has been noted that in some trusts like Bristol and Gloucester PCTs, each case should prove ‘exceptionality’ to qualify for the surgery.

Social care - Home care packages and various adaptations provided by social services enable individuals to maintain independence. The report says that the situation is far worse in Northern Ireland when compared to the UK average.

Carers’ support - The report revisits the figures from the PDS survey 2007 saying that, in spite of the fact that nearly two-thirds of carers were caring for 50 hours a week or more, just over one in ten carers were receiving support from their local authority. Of the carers who responded in the 2007 PDS survey who reported wanting help with day-to-day caring, less than a fifth were getting the support they required. Over half of carers who need a break are not able to get one.

Information and signposting - A study on access to information for people with neurological conditions, conducted last year, revealed that “Over a third of people left the appointment at which they received their diagnosis with very little understanding of what their condition entailed, but also without contact details for a patient support organisation.”

Integrated services - The Inquiry indicated that services are commissioned and planned in segments rather than across the full patient pathway, pointing to a lack of integration between services.

Training and awareness amongst Professionals - The report quotes PDS survey findings that less than one in five people felt that doctors, nurses and other hospital staff understand the condition very well. The report also refers to a recent PDS skills audit where half of the GPs participating stated that they were not confident in identifying non-motor symptoms of Parkinson’s disease.

People with Parkinson’s disease in care homes - In particular the report outlined that services by Speech and Language Therapists into nursing homes were very patchy even though residents need a lot of input. There were also issues with regards to care home staff training deficiencies.

Black and minority ethnic (BAME) communities - ROTA (Race on the Agenda) and the Delivering Race Equality Programme evidence highlighted that people from black and minority ethnic groups were often subject to multiple forms of discrimination. Many BAME people have unmet needs which affect their participation in wider society.

Barriers to a good service
1. Lack of leverage of Parkinson’s disease and neurological policy
The report states that “we do not yet meet the NICE guideline standards due to lack of impetus behind its implementation”. It recognises the key factors behind the stark variations in services including lack of monitoring of implementation of NICE and NSF for Long-term (Neurological) Conditions, lack of financial incentives for implementation and the fact that the guidelines are not mandatory.

Dr Chris Clough, neurology adviser to the Department of Health and consultant neurologist commented that, “Unlike the policies for other conditions, responsibility for overseeing implementation of NSF for Long-term (Neurological) Conditions has been completely devolved from the Department of Health to a local level to be implemented by the PCTs and strategic health authorities”.

The inquiry found a clear contrast between NSF for Long-term (Neurological) Conditions and others such as the NSF for coronary heart disease and the National Stroke Strategy which had more resources, measures to drive implementation, clear targets with short time frames which were achieved “very quickly and very effectively”.

2. Lack of leadership
Evidence showed that the NSF for Long-term (Neurological) Conditions initially had a small central development team. This however fell through as it could not secure central funding. Other national policies such as cancer or cardiac were more successful due to their large central teams, funded directors and administrators. Neurology Alliance admitted that the “Department of Health adviser post on neurology is not a full time responsibility, only accounting for a small fraction of the consultant’s time, and the position was not fully integrated into the key decision making processes within the Department”.

3. Impact of other policies
Waiting time targets - In England, hospitals have adopted ‘new to review’ ratios in order to meet the 18 week referral to treatment target for outpatient appointments. The report noted that consultants are being pushed to discharge people coming for regular reviews back to the care of the GP’s, to enable them to free-up time to see more new referrals in order to generate a bigger income for their hospital/Trust. Similarly problems have been noted with nine-week outpatient target for new referrals in Northern Ireland.

Payment by Results (England) - The Association of British Neurologists commented that the ‘Payment by Result’ incentive is entirely inappropriate and counter-productive for patients with long-term neurological conditions as every patient is different and the follow-up recipe for each patient is also different. It further opined that current tariffs for community-based multi-disciplinary teams and for the contribution of specialist nurses were inadequate.

Social services eligibility criteria - Shortage of resources has led local authorities in many areas to limit assistance for those who meet the highest thresholds of need giving low priority to prevention. The report criticised how services tend to discharge patients after the provision of an initial service, such as a one-off respite break or installation of a piece of equipment, despite their ongoing and growing needs.

Carers’ policies – The PDS commented on the lack of monitoring of how the £150 million fund provided to PCTs for short breaks for carers was spent. Gordon Conochie, Joint Policy and Parliamentary Officer for Princess Royal Trust for Carers and Crossroads noted that according to their survey, this money was not being allocated to the services for which it was intended. The individual primary care trusts are not being told how much of the £150 million they are receiving, and therefore this significantly impinges on their ability to plan their PD services.

4. Commissioning and planning services
“Some GP practices and PCTs only have a few people with Parkinson’s disease on their books posing challenges to practice based commissioning stressing the need for collaborative commissioning” observes the report. It also noted that the separation of health and social care budgets has led to unnecessary complications in providing holistic care. It recognises the lack of incentive to commission across the boundaries of health and social care as the cost savings of an intervention funded by one service may be felt in the other service.

5. Staff Training
Dr Clough (neurology adviser to the Department of Health) revealed that the need for a neurology workforce review had been identified when the NSF for Long-term (Neurological) Conditions was developed. However after some initial efforts to look at what is the workforce one would need to deliver the NSF, this has been abandoned.

NICE guidelines recommend that a Parkinson’s disease specialist nurse should have a caseload of about 300 patients, but some PD nurses have caseloads of around 700. Lack of time available for Parkinson’s disease nurse specialists to provide training to non-specialist workforce, and the increased turnover of the non specialist staff have been identified as important barriers to be addressed.

Overcoming the barriers
The APPG report recommends strict monitoring of the implementation of guidelines. It suggests government should review the NSF for Long-term (Neurological) Conditions to measure the implementation of their 11 quality requirements at the half waypoint, to audit the service against the NICE guidelines, the Welsh Assembly Government to recognise clear time targets for implementation of the Welsh Neuroscience External Expert Review Group recommendations, outcome monitoring and to put in place stronger incentives to improve adherence to guidelines.

It also recommends that Health Departments in England, Wales and Northern Ireland must recognise the impact of new policies on services for people with long-term neurological conditions and accommodate their long term needs. It further recommends that the governments organise national registers for people with neurological conditions to provide adequate data for commissioners and planners to inform their work. The report aspires to services which are jointly commissioned across health and social care so that it can respond to patient needs holistically. It urges that Health Departments review the neurology and social care workforce to inform the workforce planning decisions. It recommends the Welsh Assembly Government should review the social care workforce involved in the care of people with neurological conditions as part of their implementation plans to take forward the recommendations of the Welsh Neuroscience External Expert Review Group.

The report further urges service development planners to recognise long-term cost implications of inadequate preventative measures, asks them to specify the need for providing information and signposting for clients to relevant services, and ensure these developments through monitoring. It insists that the service planners need to work with patients and professionals to develop service specifications for integrated models of service delivery which will reflect the holistic needs of people with Parkinson’s disease, and to ensure that people from black and minority ethnic communities are involved in the development and review of services, and again that services are signposted effectively for them to allow them full access. The report demands clearer lines of responsibility for neurological policy and implementation of guidelines with national leadership at government level married with local leadership where services are to be developed and delivered.

A vital issue for the APPG for Parkinson’s disease will be to ensure a high profile for Parkinson’s disease as part of the political agenda in the coming years if the significant gaps in all aspects of health and social service provision for people with PD are to be meaningfully addressed.

Anuprabha Wickramsainghe
St4 in Old Age Psychiatry
Martin Curtice
Consultant in Old Age Psychiatry
Birmingham

References

1. Please mind the gap - Parkinson’s disease services today’
(www.parkinsons.org.uk/PDF/APPG_Report_Please_Mind_the_Gap.pdf)

2. www.parkinsons.org.uk/about_us/policy_and_campaigns-1/ campaigns/fair_care_for_parkinsons.aspx

Existing Guidelines

• The National Service Framework for Long-term (Neurological) Conditions 2005 - A ten year strategy for improving services for people with neurological conditions in England insisting on 11 quality requirements in health and social care
• NICE clinical guideline 2006
• Welsh Neurosciences External Expert Review Group called for access to nurse specialists and specialist clinics close to patients’ homes
• Physical and Sensory Disability Strategy in Northern Ireland expected to cover wheelchairs, community care, respite, neuro-disability and communication impairment
• Policies supporting Carers UK carers’ strategy 2008 outlined an additional investment of £150 million towards planned short breaks for carers.
  Caring for Carers in Northern Ireland, 2006
  Carers Strategy Wales Action Plan, 2007
• Other relevant government policies
  National Dementia Strategy in England 2008
  Department of Health Commissioning Pathway for Tremor
  

BGS Newsletter, November 2009
Issue 24 ISSN 1748-634000 24