Written evidence submitted by Parkinson’s UK (PRI0044)

Introduction

1. Parkinson’s UK welcomes the select committee inquiry into primary care as GPs play an important role in ensuring people displaying early signs of Parkinson’s are promptly referred to specialists who are able to diagnose the condition so that they can start to receive the treatment they need.

2. GPs also help co-ordinate the ongoing care for a person with Parkinson’s, which includes their drug regimen. Finding the correct medication regime is crucial to help someone manage their condition effectively.  In addition, they also play a crucial role in the management of the non-motor symptoms of Parkinson’s such as depression and pain which can be frequently overlooked but in many cases; debilitate people with Parkinson’s more significantly than their movement symptoms.

About Parkinson’s and Parkinson’s UK

3. Parkinson's is a progressive, neurological disorder, with no known cure that affects around 127,000 people in the UK. Parkinson's affects people from all social and ethnic backgrounds and age groups. Around a third of people with Parkinson’s develop symptoms before the age of 65, and one in 100 before the age of 40. The number of people with Parkinson’s is estimated to increase by 28% by 2020.

4. Everyone with Parkinson’s is different and while the condition affects movement (rigidity, tremor and slowness of movement) there are over 40 “non-motor” symptoms that people report including anxiety, depression, fatigue, pain, continence issues, memory problems and sleep disturbance.

5. We believe that with appropriate care and support, many people with Parkinson’s can have a good quality of life for many years after diagnosis and that people with the condition, their carers and families should be able to exercise their right to access effective health and social care services at every stage of the condition. This should always involve timely provision of good quality information so people know what support is available and how they can access it.

6. Parkinson’s UK is the research and support charity for everyone affected by the condition. We offer education services for professionals and have recently developed a UK Parkinson’s Excellence Network[1] to link health and social care professionals across the UK to drive up the quality of services.

7. We also provide self-management programmes[2] for people living with the condition; we seek the views of people affected by the condition and campaign for better services to enable people with Parkinson’s and their carers to live independently.

8. As well as submitting written evidence we would also be happy to provide further oral or written evidence.

Executive summary

9. Our response focuses on:
1. The quality and standards of care for patients
2. Demand and access (including out of hours access and proposals for 7 day access)
3. Funding (including local and national distribution of resourcing)
4. Commissioning
5. Future models of care as piloted by the Five Year Forward View Vanguards
6. Workforce: current and future challenges (including recruitment, retention, training, skill mix, contractual models, workload and pay).

The quality and standards of care for patients

10. As stated above the GP’s role in keeping people with Parkinson’s well is crucial; they refer people on for diagnosis and they also play a vital role in managing their medication regime which aims to control their Parkinson’s symptoms. This takes on even greater significance when considering the complexity of some drug regimes for people with Parkinson’s, which can involve taking as many as 30 different tablets at very specific times throughout the day.

11. Parkinson’s UK therefore acknowledges the critical role GPs play in the initiation of diagnosis and overall primary care of Parkinson's and how difficult this can be. Recognising the symptoms of Parkinson’s and correctly referring a person on to a specialist without having treated them (as recommended in the NICE Clinical Guideline on Parkinson’s[3]) is very challenging.

12. Following consultation with people affected by Parkinson’s we outline what would make a high quality GP service for people living with the condition:
1. Continuity of GP – Parkinson’s is an incredibly complex condition that affects each person differently. It is vital a person sees a GP who not only understands the condition but also the intricacies of a particular person’s condition.
2. Fast access to the service with flexible appointment times.
3. GPs recognise the many symptoms of Parkinson’s so that they can swiftly refer a person to a specialist without treating them, as required in the NICE Clinical Guideline.
4. GPs maintain accurate and up-to-date lists of medications for patients in the event they have to unexpectedly attend hospital and are in receipt of accurate information about any changes to a regimen made during a hospital admission as part of a comprehensive discharge summary.
5. GPs acknowledge the importance and relevance of all the healthcare professionals in a person’s multi-disciplinary team (e.g. a consultant or Parkinson’s Specialist Nurse, a physiotherapist or a Speech and Language Therapist) and makes decisions in consultation with all of these people.
6. Consistent prescribing – GPs prescribe the same drug for people with Parkinson’s every time, not switch between generic and branded versions to save on costs.
7. GPs allow adequate time in appointments for the person with Parkinson’s to discuss their concerns and is prepared to listen.
8. GP surgeries effectively signpost people with Parkinson’s to support charities such as Parkinson’s UK – particularly at diagnosis.
9. Information about the condition and Parkinson’s UK services to support the individual and their family is available in the surgery.
10. People affected by the condition are encouraged to participate in the GP patient participation groups to feed in views about improvements that can be made to the service.
11. People with Parkinson’s are made aware of clinical trials and are effectively signposted by their GP to research opportunities and information on how to find out more.
12. Administrative staff are empathetic, understanding and accommodating to the needs of people affected by Parkinson’s registered with the surgery.

Demand and access (including out of hours access and proposals for 7 day access)

13. As highlighted above flexible access to GP services is important in the effective treatment of the condition, particularly as Parkinson’s symptoms can fluctuate. However we recognise the added stress this will place on GPs, particularly at a time when GP practice numbers are falling.

14. We would therefore recommend the Government proceeds with caution with these proposals as the quality of care for people with Parkinson’s and the ability of the GP to fully consider the person’s entire health and social care needs should also be weighted as equally important.

Funding (including local and national distribution of resourcing)

15. On this point we would encourage the committee to ensure that consistency of GP services is addressed, so someone living with Parkinson’s is able to access a similar level and quality of service regardless of where they live in the UK.

Commissioning

16. We would recommend the items we outline in point 12 of this submission are part of commissioning documentation for GP services in the future and would welcome the opportunity to provide feedback from people affected by the condition.

17. Receiving the correct preparation of a drug for someone with Parkinson’s is crucial. We regularly receive reports that GPs have prescribed cheaper generic medications for their patients. These may vary in both the level of active ingredients[4] and the effect of non-active components on the absorption of active ingredients. The differences between formulations are small and controlled through regulation, but given the complexity of medication regimens used in Parkinson’s, they still might be clinically significant in terms of symptom control[5].  As a result, switching people between these drugs can be distressing for an individual as well as being wasteful to the GP, the NHS and the taxpayer as they don’t produce the desired result.

18. We would therefore call on the practice of switching patients from branded medications to generics ceases immediately and would recommend that this is highlighted in GP commissioning documentation and is also reiterated to Clinical Commissioning Groups.

Future models of care as piloted by the Five Year Forward View Vanguards

19. Research commissioned by Parkinson’s UK[6] found that poor integration between health and social care services was an issue for both professionals and people with Parkinson’s. It was seen as a potential barrier to timely receipt of information and support to access social care services in a way that would anticipate a person’s future needs. It also found that people with Parkinson’s wanted a ‘professional champion’ to help them navigate the social care system, which was often unavailable.

20. A forthcoming evaluation[7] of one of the Social Work Practice Pilots (due to be published later in 2015) which provided wrap-around social care support for people with Parkinson’s, found evidence that closer integration between health and social care, including GPs, enables a more ‘Parkinson’s-aware’ social care service.

21. The Pilots developed strong links with health professionals in order to provide complex case management for people with the condition. The evaluation found that by working closely with Parkinson’s nurses and GPs, this enabled a ‘true health and social care’ model and created more consistency and continuity for people with Parkinson’s and their carers.

22. We welcome the shift to invest in community services to keep people with Parkinson’s out of hospital and closer to the services they need while also reducing the demand placed on hospitals.

23. We also welcome the opportunity to be involved in developing innovative models of care through the Vanguard sites (and supporting their wider dissemination through the UK Parkinson’s Excellence Network) to ensure that people with Parkinson’s across the UK have greater control over their care, that it is better coordinated and addresses all of their conditions, not just Parkinson’s and finally that it produces better health outcomes.

Workforce: current and future challenges (including recruitment, retention, training, skill mix, contractual models, workload and pay).

24. Parkinson’s UK acknowledges that effective management of the condition can be difficult for any healthcare professional. We want to ensure that GPs feel supported and confident in their knowledge of where to find the right level of information relating to Parkinson’s and how they can ensure people living with the condition and their families/friends are able to access the right information at the right time. We also believe it is important for GPs to provide a positive outlook and inspire their patients to take control of their health and life with Parkinson’s.

25. Our development and ongoing support of the UK Parkinson’s Excellence Network allows us to do this. The UK Parkinson’s Excellence Network is the driving force for improving Parkinson’s care and connecting and equipping all professionals to provide the services people affected by the condition want to see. Directed by health and social care professionals, the Excellence Network offers free tools, education and data that are crucial for better services and professional development,

26. We have also partnered with BMJ Learning to produce two online training modules for GPs about Parkinson’s. The two modules cover initial assessment and referral and non motor symptoms and combined were accessed 2,295 times in 2013. We would therefore recommend that this useful tool is promoted to GPs to ensure they are familiar with the condition to allow for the correct referral, diagnosis and ongoing support.

27. As stated above the effective management of the medication regime for a person with Parkinson’s is crucial. We would therefore recommend that sustainable relationships between GPs and community pharmacists are built up and recognised in GPs training and contracts to ensure people with the condition are supported to manage their condition without recourse to hospital and their consultant.

28. We are extremely concerned at recent comments by Work and Pensions Secretary Iain Duncan Smith (24 August) that GPs ‘need to see the health benefits for their patients of early support and a return to work’ and proposals for possibly co-locating Jobcentre advisers in GPs’ surgeries[8]. Parkinson’s UK strongly believes that a person’s private medical appointments must be completely separate from ‘back-to-work’ support, to enable the individual to focus on regaining their health.

29. We believe that the proposals, if enacted, would potentially deter people with complex conditions such as Parkinson’s from seeking medical advice. There would be a real concern that information about the state of their health would be shared without their permission, or that their GP has an agenda of forcing them to return to work at the soonest possible opportunity, regardless of their health.

30. This would also provide a serious conflict of interest in instances where people with Parkinson’s have applied for Employment and Support Allowance or Personal Independence Payment and have requested supporting medical evidence from their GP. It would not be appropriate if the medical evidence provided by a GP was in any way compromised by pressure from employment advisers to hasten a return to work, for example.

31. Also this proposal could add a significant amount to an already increased workload and could severely jeopardise the quality of co-ordinated care GPs are able to provide to support people living with Parkinson’s to manage their condition.

Conclusion

32. In our response we have demonstrated the crucial role a GP plays in the care and support of people living with the condition. We have provided a clear outline of what a good GP service would consist of for people with the condition and we have also stressed the importance of flexibility of access to GP service while balancing the need for a quality service. We recognise this is a particular challenge at this current time due to dwindling practice numbers.

33. We have also stated the importance of consistent access to GP services across the UK wherever you live and have highlighted the importance of the commissioning documentation stating the need to cease the practice of switching an individual with Parkinson’s from branded to generic medications solely on the basis of cost – in our experience they do not effectively control the symptoms and also increase distress for the individual.

34. Our submission also addresses how innovative models of care can provide an integrated and more person-centred care for people living with the condition and encouraged localities to involve the third sector in developing these.

35. We conclude by addressing the training required for the future generation of GPs to inspire a positive approach to an individual’s condition and we outline how we are supporting this work through the development of the UK Parkinson’s Excellence Network and the production of bespoke training materials.

36. Finally we share our concerns about recent government proposals to possibly co-locate Jobcentre Plus employees in GPs surgeries to encourage people who are unable to work back to the workplace. While we recognise the importance of a GPs role in helping to assess whether an individual is able to work, we believe this approach will put people off seeking vital health advice which could prevent a further health and care crisis and will inevitably cost the taxpayer more. It will also dilute the role of the GP and could jeopardise their ability to provide high quality, flexible integrated care that meets the patients’ needs while also keeping people out of hospital.

4 September 2015