Some good news. The National Institute for Health and Care Excellence (NICE) in the UK are in the process of updating guidelines for the diagnosis, treatment and management of Parkinson’s Disease and its medications.

In particular, the guidance around their mental health side-effects is being reviewed – its first update in 11 years! I spoke with Parkinson’s UK this week who agreed this was a long time coming, particularly given that a frightening 40% of Parkinson’s Disease patients will experience a mental health problem of some sorts – such as impulse control disorders (ICDs), paranoia, hallucinations, anxiety and depression.

Not through any of my own campaigning I should add, but a great result nonetheless!

The draft guidelines have been published and the final document is due to be published later this month following a consultation.

Overall I’m pretty pleased with where the draft guidelines have got to, but still think there is room for improvement. Some of the welcome additions in particular include

• Physicians must now ask the patient to sign a waiver ahead of taking dopamine-agonist medication, having been fully briefed (TBC!) on the potential side-effects
• More importantly, physicians must also communicate the risks, both verbally and in writing, to a family member
• More regular appointments and updates with a trained Parkinson’s nurse to improve monitoring and tracking of side-effects.

I have provided NICE and Parkinson’s UK with comments on the draft, which you can read in detail here. In summary, the main areas I think the guidelines fall short on are

• Greater integration between PD and mental health services (incidentally, in many countries neurology and psychology form a single area of expertise!)
• Greater emphasis of what certain disorders can actually mean in practice and the impact they can have on patients lives – i.e., impulsiveness is the side-effect, but gambling away all your money is the symptom.
• Making clear to the patient and the family that the family need to not just be informed, but involved too. This might mean addressing how they interact and communicate going forward. It may also be advisable for patients to consider setting up a power of attorney with a trusted loved one, given that potential implications on their judgement under the medication.
• The evidence regarding potential indicators of impulsiveness disorders is limited (e.g., what might make someone more susceptible than others); really what the evidence says that this can happen to anyone, regardless of their history, lifestyle and wellbeing. There is a risk that emphasis on these indicators may give people who fall outside of these indicators a reason to discard the risks. Particularly with mental health disorders, given a general lack of awareness and understanding of these, people often just dismiss it is something that happens to someone else. Emphasis on these loosely evidenced indicators encourages this.
• Making absolutely clear there is no guarantee that side-effects will subside if/when the patient decides to come off the medication.

Unfortunately I’ve missed the deadline of the consultation to formally contribute to the process, however, I am told these suggestions are largely agreed with. I’m hopeful therefore these will be reflected in the final document.

Of course, if they remain insufficient then I will continue to campaign for these to be improved. And of course, guidelines are only useful if they are fully understood and adopted. I will also be looking to make sure, particularly GPs, are fully aware of the real risks, now that they have been more appropriately formalised.

So all in all, I’m extremely pleased that the way in which these medications are issued and tracked looks set to change, and confident that, if carried out correctly, more cases like my fathers can be avoided. I can say for certain, had these been made standard when my father was first prescribed his dopamine-agonist medication and I had been informed from the outset, that I would have made the connection much sooner and without such disastrous (and expensive!) consequences. It is a shame it has taken so long for this change to be made, when the research and evidence has developed so much in the meantime, but I’m pleased the changes are finally being made.

I am looking forward to reviewing the final document, along with Parkinson’s UK and their campaigns team. NICE are also set to publish the consultation comments from a range of stakeholders – neurologists, charities, patient groups, and drug manufacturers – which I’m particularly intrigued to review and interrogate!

I’m also really excited to be getting involved with the Parkinson’s UK campaigns team, possibly as a case study and/or as a family member’s voice on future developments. One of the things we discussed more broadly than the side-effects is the lack of awareness and understanding of Parkinson’s Disease itself more generally. In comparison to many other diseases, funding and awareness for PD falls far short when taking into account its relative prevalence rates.

This is something my Dad is particularly passionate about, and was the motivation for his own fundraising and awareness raising activities – organising and playing in two charity golf tours through the states in 2012 and 2014, raising money for the National Brain Appeal.

One initiative Parkinson’s UK are working on currently is to asks MPs to join the All-Party Parliamentary Group on Parkinson’s. This group seeks to raise awareness of the condition and push for improvements for people affected by the disease. You can help them by following this link to ask your MP to join. My local MP, Jeremy Corbyn, is already a member despite being a pretty busy guy right now!