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Keeping PSP & CBD priorities during the COVID-19 crisis

It has been a year like no other for PSPA. People living with PSP & CBD are amongst the most vulnerable in our communities – not least as their impairments, which become increasingly severe as the conditions progress, can already result in severe social isolation.

Early in the pandemic, it was clear that, alongside the human story of the effects of the restrictions on people with high risk conditions such as PSP & CBD, there was going to be a succession of policy, legislation, rules and opinion that we were all going to be subjected to for the foreseeable future. As a UK wide charity this meant keeping abreast of a number of regulations and restrictions which at times has been no mean feat.

To keep on top of what health consequences might arise from resource restrictions and interruptions to planned care, we produced a number briefings on topics such as; ethical concerns such as the use of the Clinical Frailty Scale and DNACPR decision-making, thoughts on the use of digital technology in healthcare with people with PSP & CBD (who may have dexterity and eyesight issues resulting from their conditions), concerns about the new (UK wide) Coronavirus Act and its emergency powers, feedback from the Association of British Neurologists (their response to COVID-19 and their aims to minimise fall out in the chronic disease population), and one on the huge potential impact on the economy of charities being very badly affected by COVID-19.

This briefing series now serves as a useful archive of the steps that were being taken to manage the risk to vulnerable people including those with PSP & CBD during this critical time. It was especially useful to follow a timeline of the instructions to the NHS to restart significant sections of the health service such as musculoskeletal services, outpatient appointments and therapy interventions as we could see if these matched what people with PSP & CBD were telling us at PSPA. The restart remains a concern to us and we will continue to monitor the impact of the pandemic and the seismic effects on health and social care provision particularly on the Care Act easements and continuing healthcare and carer support assessments. Policies on hospital and care home visiting have been especially challenging for the PSP & CBD community and we will continue to pay particular attention to this should the COVID-19 restrictions increase again anywhere in the UK in future.

This policy information from across the UK has been useful intelligence for the PSPA Helpline and Information service which has offered a constant service throughout COVID-19 to people living with PSP & CBD, family carers and care teams. The email and telephone service provides a vital lifeline of support and has been on hand to answer calls and emails but also proactively contact people known to PSPA to check in with how they are managing their conditions. Thanks to volunteers answering an appeal to come forward for training, we were able to return the Helpline evening support to five days a week, 7pm to 9pm, which will be crucial as more people may have questions for us as lockdown restrictions continue to be monitored and amended locally.

During this time it has been heartening to work on some very positive developments: Scotland’s first five year plan for neurological conditions – Neurological Care and Support in Scotland: A Framework for Action 2020 – 2025 – was published in December last year and there are new published Scottish standards for neurological care. These developments present a real opportunity to make a difference for people living with neurological conditions such as PSP & CBD. Even better news is that the Scottish government have released funding to support the implementation of the Framework including opportunities to bid for short term projects that can be started immediately and delivered by March 2021. PSPA has submitted a project bid and we are considering a follow up bid for a longer-term project that can start in April 2021 and conclude by March 2022: Up to £1 million is available in 2021 to 2022 which will make a real difference to people with neurological conditions and to delivering the Framework’s commitments.

The most recent briefing considered by PSPA colleagues and Trustees looks at the impact on equality of plans for restart and remobilisation of health and care services on those with the protected characteristics of ethnicity, disability, gender, sexuality, religion or age. We are particularly concerned with how the next few months will be experienced by those with PSP & CBD and whether they will endure further disadvantage unnecessarily.

PSPA is aware as many as 50% of people living with PSP & CBD are initially misdiagnosed with similar neurodegenerative conditions such as Parkinson’s. We will monitor that plans for restart, remobilise and rehabilitation will not make this shocking statistic worse and that people with PSP & CBD receive appropriate and timely care.

Here are some of the equality impacts we are considering:

  • Men are more likely to experience severe COVID-19 symptoms and are disproportionately represented in deaths from COVID-19 – this could be considered alongside the slight male dominance in the prevalence of PSP
  • Some may, due to the effects of their disabling illness, have reduced understanding of the reasons for things being done differently due to COVID-19 and may just think their support has disappeared leaving them more isolated
  • People who use health and social care services who have information and communication needs because of a disability or sensory impairment e.g. due to PSP or CBD, or because English is their second language, may need targeted communications about the pandemic (recordings, easy read versions)
  • Social distancing policies might have different impacts e.g. in terms of end of life care for people in different religious groups, for example, where it is especially important in some religions that the person sees either their family or a religious or spiritual leader or official when they are nearing death
  • Concerns about racism and distrust of health services among BAME communities may lead to people avoiding going to hospital, for fear that their needs wouldn’t be considered a priority

There is still lots to be done in health and care policy and the story of COVID-19 for all of us is not over yet – these are difficult times which make it challenging to plan for a certain future. PSPA will continue to examine the legal and ethical implications of the policy information handed down by the governments across the UK to ensure the needs of people with PSP & CBD and their families and carers are not forgotten as we all navigate through what is hopefully the tail end of the pandemic.

 Gill Dickson, PSPA Scotland Country Manager

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