After three years of living with the diagnosis of Parkinson’s Disease, I have begun to formulate some thoughts and suggestions for improving current Parkinson’s services. These suggestions are based on my personal experience as both a doctor and patient, and fit into five main categories: presenting symptoms, specialist referral, secondary care consultation, medical research, and patients’ own involvement.
1. Presenting Symptoms: Improving GP Knowledge
Most people are likely to present to their GP, which means that individual practitioners need to be brought up to date with the widespread nature of these early presentations, as well as the multiple ways of presenting.
This can include: Type 2 REM sleep disorders (as in my case, 10 years earlier than the muscle stiffness and rigidity), and as we know, other early presentations may encompass bowel habit changes (such as constipation), irritability, mood-swings, memory loss and cognitive decline, fatigue, bladder disturbances such as frequency, and dystonia (a state of abnormal muscle tone resulting in muscular spasm and abnormal posture). The sense of smell may also be affected, together with postural changes in blood pressure. A typical Parkinsonian tremor is not essential for the diagnosis, but when it is present, this tends to speed things up.
2. Specialist Referral: Speeding up the Process
Once the index of suspicion is raised, then early diagnosis calls for a Consultant Neurologist review, by someone with a special interest in this condition. However my experience in London is that Parkinsons is not coded for, as a separate entity, and the referral letter from the GP to a neurologist does not lead to the choosing of someone with a special interest in Parkinsons.
The NHS e-referral system is extremely frustrating, and again in my experience, I have found it impossible to be referred to the clinic of a consultant of my choice. NICE Guidelines advise that the referral needs to be soon after the diagnosis has been raised (i.e. within 8 weeks). In reality, this usually means a minimum of 6 months delay.
3. Quality of the Secondary Care Consultation
There seems to be wide variability in the extent of investigation. This has been shown in research studies, which have suggested that clinical diagnosis of PD is only accurate in around 75% of the cases. Guidelines again need to exist for secondary care assessment, supported by NICE evaluation. A diagnosis of such a serious disease, with all its negative connotations can be devastating. In a Parkinsons Support Group that I attended, when a patient aged 41 was told of the diagnosis, and then told their husband, he promptly packed his bags and left. A shared interview between spouse, partner or key supporter needs to be followed within a month – in order to share concerns and learn about support available. It is vital that the person with the PD diagnosis is made aware of this support and various care options at the very earliest stage.
Referral to exercise classes at an early stage has been shown by research to increase muscular strength, diminish and decrease falls, and improve mood where clinical depression is found in over 50% of people with the condition. Joining a Parkinsons UK support group will ensure that there is a sharing of experience, and knowledge of local services.
4. Medication Research and Collaboration
If medication is started, the latest research suggests that the genetic make-up of the individual will become increasingly important – as genetic abnormalities are linked to particular Parkinsons syndromes. For instance the LRRK2 gene, if present, suggests that individuals may belong to a sub-group where mitochondrial disturbance is present, and lead for the first time, to remission of symptoms. Again, the need is to develop services where different professionals come together to provide a holistic approach. This would include physiotherapy, occupational therapy, technical advice on aids and appliances, psychological support and speech therapy, all under the auspices of a consultant neurologist with a special interest in Parkinsons Disorder.
Understanding of the basic patho-physiology of Parkinson’s Disease is developing rapidly. It looks as if there are many syndromes relating to particular disturbances of brain function, which will have characteristic profiles leading to specific treatment programmes. Only by interrogating accurate data and matching clinical signs to genetic profiles within specialist centres, will targeted treatment and progress be possible.
5. Note-keeping: The Patient’s Diary
As this is a life disturbing syndrome, with the need to tailor treatment to the individual’s presentational symptoms, accurate records held by the patient about the circumstances of their diagnosis and Parkinsons journey needs to be implemented. This would avoid medical details being lost or information simply not recorded. The act of engagement of the patient in monitoring themselves and creating a self-care programme is so linked to maintenance of function.
What are your experiences of Parkinson’s Services? Do you have any ideas on how current provisions could be improved? Join the conversation – I would love to hear your thoughts.