Scotland can’t wait… social care needs to act about Parkinson’s

On April 11th there will be a global coming together for what for a number of years now has been recognised as World Parkinson’s Day. It sits within Parkinson’s Awareness Month which is designed to increase knowledge about and awareness of the condition. Like many people Parkinson’s has touched my life professionally and personally. It is a condition which affects around about 13,000 people in Scotland and every week it is estimated that around 30 new people are diagnosed with Parkinson’s. Anyone working in social care services and supports will be aware of the extent to which this condition affects the daily lives of so many across the country, and also how poor our response to the condition has been and still is. Those of us working in social care recognise the truth that Parkinson’s is the fastest growing global neurological condition.

This was exceptionally well argued in the latest report from Parkinson’s UK in Scotland, which was published in January 2024. The report is entitled ‘Scotland can’t wait’ and is a cogently argued, data packed document listing the many gaps in support for people living with Parkinson’s and affirming the truth that these people and those who support them cannot continue to wait for the issues of failure to be addressed.

It is, sadly, a very familiar story to so many people who live with neurological conditions in Scotland today. Whether it is dementia, or MND or Parkinson’s there is a systemic failure to respond to conditions which can be significantly supported and alleviated were the right support to be in place. We may as a system and nation be good at publishing plans and strategies but our implementation and driving of real change that makes a difference on the ground falls woefully short. This truly is a failure to care.

The ‘Scotland can’t wait’ report has a whole host of recommendations for NHS Boards, on investment in medication, on workforce development and increased capacity and much more. It is worthy of both reading and wider dissemination. A section which particularly interests me is one which emphasises the need to do more around mental health and in relation to those who live with Parkinson’s who develop dementia.

Parkinson’s manifests itself in diverse ways and no two people demonstrate and evidence  the exact same responses to the disease. It is estimated that there are over 40 distinct characteristics that make up the Parkinson’s condition. The NHS website describes it in the following terms:

Parkinson’s disease is a condition in which parts of the brain become progressively damaged over many years.

‘The main symptoms of Parkinson’s disease are involuntary shaking of particular parts of the body (tremor); slow movement and stiff and inflexible muscles.

A person with Parkinson’s disease can also experience a wide range of other physical and psychological symptoms. These include depression and anxiety, balance problems (this may increase the chances of a fall), loss of sense of smell (anosmia), problems sleeping (insomnia) and memory problems.’

In Scotland it is estimated that 30% of those living with Parkinson’s have dementia and an estimated 50% need support with daily activities. The conversations I have with both care home and care at home providers and front-line staff illustrates that supporting people with Parkinson’s is increasingly also about supporting people who are living with Parkinson’s and dementia.

The recommendations of the Scotland report highlight the gaps and they range from a lack of awareness amongst NHS generic mental health professionals about the nature of Parkinson’s; the need to increase the neuropsychology and neuropsychiatry workforce to meet the needs of people with neurological conditions to the need to develop better support for future care planning (including Powers of Attorney) before someone develops dementia.

Over the years I have noted a growing relationship between some Parkinson’s services and the social care and dementia service sector, but this occurs more often than not through local relationships and professionals committed to working collaboratively around the needs of a person. The Parkinson’s UK Scotland report quite rightly argues that such collaboration and co-ordination needs to be much more systematic, planned and adequately resourced. At the moment I very much fear that people living with Parkinson’s who develop dementia are being doubly excluded and not achieving the level of support and care for their dementia that they rightly deserve. The idea of joint clinics and the inclusion of Parkinson’s specific education within general social care dementia training are two good examples of how progress could be made.

In speaking to a family member recently she remarked to me how she thought she was well prepared and aware of what the Parkinson’s journey was going to mean for her partner but that she had been blind-sided by the changes in him which she now (with hindsight) recognised as his developing dementia. These included him starting to have bad and frightening dreams, his inability to make a decision and keep to an agreed plan or action; that he was finding basic activities like getting dressed or using the TV remote control really difficult. She had not known of the significantly increased risk of developing dementia if you have Parkinson’s and neither, she told me, had most of her friends in support groups been aware of this factor.

A real legacy of this year’s World Parkinson’s Day would be for there to be positive action at all levels, not least national government, to address the recommendations of the Scotland can’t wait  report and for those of us who work in and deliver social care supports, not least dementia, to better understand the consequences of a condition which is still so misunderstood and sadly all to frequently ignored.

Over the last couple of years, the Parkinson’s community shared hundreds of poems with Parkinson’s UK for World Parkinson’s Day 2022 and 2023. They were happy, funny, sad and thoughtful and told the world how Parkinson’s has affected individuals. Here is one which demonstrates the positivity of so many I have known who have lived with Parkinson’s. But that positivity demands Scottish society and care and health leadership to play its part because Scotland truly can’t wait.

Shiona from Dumfries and Galloway  wrote:

I can still breathe

I can still bend

I can still laugh

I can still love

I can still fly

Donald Macaskill