Email your comments

I wonder how James Parkinson would feel about the current circumstances surrounding the disease that bears his name? Advances in our understanding of the disease currently advocates that the complex medical and social needs of Parkinson’s disease patients are best met by a multidisciplinary team with a diverse range of clinical experience, rather than an individual working in isolation.

Indeed, such is the complexity and nature of the disease, the treatment and management of Parkinson’s often involves several multidisciplinary teams, for example, a hospital team, a primary health care team, a community based outreach team, and a social services team. Each team is in turn comprised of its own multi-discipline professionals, for example, neurologist, geriatrician, GP, physiotherapist, speech therapist, occupational therapist, clinical psychologist, dietician, podiatrist, pharmacist, and, of course, last but certainly not least, the patient and their carer.

It is from the last two members of the multi-disciplinary team that the impetus for this essay arises. How can multidisciplinary working ensure that the real needs of older Parkinson’s patients are being met?

The goal of any treatment or therapy is to improve or maintain a quality of life, or participation in life, relevant to the individual. Patients with PD often experience difficulties in carrying out daily activities as a direct result of the physical and emotional symptoms of the disease. Combine this with potential age-related problems and inevitably quality of life and participation in life are adversely affected.

Focus on Patient Need
It is crucial then that multidisciplinary working must focus, as its priority, on treatment and care strategies based around patient need. In order to meet this need, it’s essential to understand which areas contribute most to older PD patients’ reduced quality of life. Whilst the evidence base is limited, there have been international and UK focused patient surveys in the past that have highlighted significant levels of unmet physical and psychological need amongst PD sufferers. Apart from common physical factors such as feelings of tiredness, lack of sleep, writing ability, and tremor, postural instability, disability and cognitive impairment, psychological factors affecting quality of life include depression, “satisfaction with explanation of condition at diagnosis”, and “current feelings of optimism”. Furthermore, what patients actually want can be very different from what doctors and health professionals think they want. The main priority in the design of treatment strategies and care management so often tends to focus on controlling the motor symptoms of the condition despite the contribution of non-motor symptoms to disability being greater.2

To combat the disparity between what the patient feels should be the management priority and what the health teams thinks should be the primary focus, goals must be collectively set, with the patient leading the process. Without common goals, the team lacks direction, cohesion and purpose. Without the sharing of resources, interdisciplinary knowledge can become sketchy and fuelled by ignorance.Without shared responsibilities, individuals can feel excluded and the team does not operate as a team.

Proactive Referral Strategy
Multidisciplinary working needs to recognise the progressive nature of PD and that the management of the disease needs to be adapted to its progression. It requires fluidity in order to be both proactive and reactive to the changing needs of the patient. PD can be an unpredictable disease with rapid “on/off” periods and acute admissions. The structure of the team needs to be able to respond to this unpredictability. An almost “proactive referral” strategy is needed alongside the reactive one to ensure that issues such as falls, incontinence and other associated symptoms don’t become major inhibitors of quality of life.

Multidisciplinary working in PD needs to ensure that the discipline demarcation between members of the team does not act as a barrier to effective team working. Information needs to be shared between professionals and all must be aware of the advantages and limitations of any one point of view. The “inheriting” of patients when discipline specific crises arise and discharging them when they are “better”, should also be avoided. Individuals within the team may find it difficult to fully understand the practical needs of this Parkinson’s patient if they only have sporadic and intermittent contact.

Unequivocally, communication should be the cornerstone of any multidisciplinary working. Without it, the whole team breaks down, the patient loses faith and ultimately, the needs of that patient aren’t met. In my own experience, the involvement of Parkinson’s Disease Nurse Specialists (PDNS) within multidisciplinary working appears to be vital. Not only are they able to provide multi-level specialist knowledge specific to the disease, they can act as key worker to help integrate the team, and serve as patient and carer points of contact with reference to continuity of care. Communication within the team is undoubtedly improved. Anecdotally, a Parkinson’s patient (without a PDNS) once commented that two things confused him about his disease. Firstly, his medication, and secondly, which service was likely to be ringing his doorbell next! Arguably it increased his social network(!), but was frustrating especially when each service tended to be somewhat unaware of the other.

There is certainly no doubt that PD patients do benefit from a range of services. Intensive, patient-centred multidisciplinary rehabilitation can result in significant short-term improvements in mobility, gait, speech, depression and health-related quality of life. However, the effects appear short lasting with only minor, yet equivocal benefit in mobility six months on. The key, it appears, is to provide a mixture of bespoke therapy with group social and educational activities, on an ongoing basis. There are of course, considerable financial and logistical implications to this kind of treatment and management in a disease that can be hugely diverse and unpredictable.

With regard to the future of multidisciplinary working, the introduction of “practical” policies and initiatives such as the generation of NICE Guidelines for Parkinson’s disease will ensure a standard quality of clinical care for patients. Further initiatives such as the National Service Framework (NSF) for Long-term (Neurological) Conditions are designed to support people living with conditions such as Parkinson’s disease, encouraging independent living, patient focused care and easier access to services. Crucially, one of the key themes is also to encourage joint working across all agencies and disciplines involved.

Expert Patients
Emerging concepts around Expert Patients will undoubtedly further enhance not only the care available but will ensure Parkinson’s patients are empowered to manage their own condition, ensuring their key role within the team continues. The future certainly looks promising.

Of course, the needs of PD patients are complex and evolving and perhaps striving for a one team suits all approach is somewhat Utopian. Perhaps it’s time the clinical status quo was challenged. Or perhaps we simply need to know more about exactly what older Parkinson’s patients and carers really want and need, so multidisciplinary working can be tailored accordingly.

Such is the need for up to date research in this area The Parkinson's Disease Society has introduced 'fast track' project grants in a bid to boost research into improving the everyday lives of people with Parkinson's. The value of research into this area cannot be understated. Not only does it highlight potential areas for improvement in current treatment and care, it can highlight new potential treatments that have worked for individual patients

However, it appears that such is the current high standard of healthcare in this country, we almost feel compelled to adopt a hyper-critical approach and actively look for failings in the current system. Whilst there is usually room for improvement and progression, such is our drive for perfection and the ultimate evidence base, we are in danger of feeling dissatisfied with anything presented to us. The last thing that should be occurring is paralysis through analysis. The most important aspect from which to judge the efficacy of multidisciplinary working is not necessarily from within its inherent structure, but whether it serves its purpose in meeting the real needs of the individual patient. Overall, I think Mr Parkinson would be pretty impressed.

References

1. Department of Health (1998) Quality in the new NHS: a first class service. London: Department of Health

2. Baker, M. G., & Findley, L. (1999) for European Parkinson’s Disease Association. Impact of Parkinson’s Disease on patient participation in daily life: Results of an International survey. (accessed 28th February 2005)

3. Findley, L. J. (2002) Factors impacting on quality of life in Parkinson’s disease: results from an international survey. Movement Disorders, 17 (1):60-67

4. Schrag, A., Jahanshahi, M., & Quinn, N. (2000) What contributes to quality of life in patients with Parkinson’s disease? Journal of Neurology, Neurosurgery & Psychiatry; 69: 308-312

5. Parkinson’s Disease Society (2003) Parkinson’s Aware in Primary Care. (accessed 28th February 2005)

6. Ward, C. D., & Phillips, M., Smith, A. & Moran, M. (2003) Multidisciplinary approaches in progressive neurological disease: can we do better? Journal of Neurology, Neurosurgery and Psychiatry. 74 (suppl. 4) 8-12

7. Trend, P., Kaye, J., Gage, H. Owen, C. & Wade, D. (2002) Short-term effectiveness of intensive multidisciplinary rehabilitation for people with Parkinson’s disease and their carers. Clinical Rehabilitation; 16: 717-725

8. Wade, D., Gage, H., Owen, C., Trend, P., Grossmith, C. & Kaye, J (2003) Multidisciplinary rehabilitation for people with Parkinson’s disease: a randomised control study. Journal of Neurology, Neurosurgery and Psychiatry; 74 (2): 158-162

9. Department of Health (2005) The National Service Framework for Long-term (Neurological) Conditions. London: Department of Health.

10. Parkinson’s Disease Society (2006) (accessed 27th March 2005)