The doctor gave me a diagnosis and then said “there is nothing more we can do”
How does a small charity tackle the need to support people living with PSP & CBD across Scotland, improve diagnosis and educate health professionals to make them more aware of these devastating diseases?
Getting a diagnosis of a rare degenerative brain disease such as Corticobasal Degeneration (CBD) or Progressive Supranuclear Palsy (PSP) is devastating news and is often the diagnostic end of the line for people after years of symptoms. Unfortunately, approximately 50% of people affected by PSP & CBD are often mistakenly treated for years for other conditions such as Parkinson’s disease, Alzheimer’s, stroke or Multiple System Atrophy.
But can it be true that individuals who discover they have these incurable conditions they will likely never had heard of, and that have with it a shortened life-expectancy, are told by doctors ‘there is nothing more we can do’?
Even if these words are never actually used, the patient and those around them can hear the message: ‘there is nothing we can do to cure your condition’ as ‘you will be abandoned and will have to navigate the care system yourself.’
Each individual with PSP & CBD will progress through their conditions at different stages and rates; some symptoms are common in both conditions, and some are specific to each one.
Early symptoms may include loss of balance, falls (often backwards) stiffness and eye problems – this might be difficulty looking up or down, focusing, double or tunnel vision and dislike of bright lights. As the conditions progress, these will include highly reduced mobility, severe muscle stiffness, communication difficulties, incontinence, severe social withdrawal and risk of pneumonia and aspiration.
Support from a multidisciplinary team (MDT) is essential to families and must provide their health and care at the right time, and offer an understanding that their needs will change over time.
People with PSP & CBD should be able to expect that their care is co-ordinated and information is shared, so that care provided by one professional considers or complements that provided by another.
PSPA is a small organisation but is the only national charity that funds research into treatments and ultimately a cure, as well as offering support and information to people living with PSP & CBD.
Following recent support from the Scottish Government, there is now a dedicated Country Manager for PSPA in Scotland but there is still a huge challenge in raising awareness across the wider health and social care professions about how to manage PSP & CBD.
People with PSP & CBD should be able to expect that their care is co-ordinated and information is shared, so that care provided by one professional considers or complements that provided by another. When this does not happen, they lose confidence in the health professionals looking after them and this has a detrimental effect on the quality of their lives.
Conversely, good timely support means the individual living with PSP or CBD and their family members can feel well supported with the changing impact of their illness on their daily lives.
But how does a small charity with one employee in Scotland have an effect on this picture across a whole country?
With limited charity capacity and no disease-modifying drugs available, there is an absence of awareness-raising campaigns highlighting battles to fund treatments. Yet the costs, both human and fiscal, of failing timely and proper care management in progressive conditions can be huge.
The answer is to invoke a menu of responses and activities:
- Strategically it is a reassuring time for people with neurological conditions like PSP & CBD in Scotland: The Scottish Government has set out 17 specific commitments in Neurological Care and Support in Scotland: A Framework for Action 2020-2025, so PSPA can now collaborate with other neurological charities to implement this for better healthcare and services
- There are Cross-Party Groups in the Scottish Parliament on Rare Diseases and Palliative Care. By attending these, PSPA can maximise the opportunities to get involved in policy discussions so they have the biggest impact on the quality of life of people affected by PSP & CBD
- Using volunteers is crucial to small charities such as PSPA Education Volunteers who have a crucial role in offering informative talks in education or community settings to help health and social care professionals understand key information about the impact of living with PSP & CBD. Volunteers also run local PSPA support groups at 3 locations currently providing a welcoming and friendly place for people affected by PSP & CBD, including family and friends, to meet up on a regular basis to share experiences, information and just chat
- PSPA has excellent fundraisers who can plan fundraising opportunities in Scotland such as challenge events and support awareness-raising.
- The PSPA research programme will continue in Scotland and will maximise opportunities for clinical trials and research development in Scotland.
Using the limited charity resource in this way, there is a broad scope of opportunities to improve the lives of people living with PSP & CBD in Scotland. Hopefully, in future, the feedback from people that they are told: ‘nothing more can be done’ will soon be assigned to the scrapheap where it belongs.
Gill Dickson is Scotland Country Manager for PSPA. Her post is part-funded by the Scottish Government.
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- Up to a million adults in Scotland live with a neurological condition. The numbers of people living with PSP & CBD may be twice that previously thought and up to 10,000 people may be living with the conditions across the UK[i]
- PSPA have created resources to assist health and social care professionals including GPs with diagnosis and care planning. These include the RED FLAG – PSP & RED FLAG -CBD information, created to raise awareness of the symptoms of PSP & CBD and an interactive guide to PSP & CBD at hscpguide.com This interactive resource gives an ‘Introduction’ to the conditions and Standards of Care that people should be expecting to receive. Users can read about the different presenting symptoms of PSP or CBD at different stages in the condition and select links in the evidence section of each of the stages to take you to further information such as NICE guidelines or assessment tools. This allows professionals to build their own personal guide for the areas they are interested in and even print off the guide or email it to a colleague
- The PROSPECT study is a research programme, funded by PSPA, which uses MRI scanning, blood and cerebrospinal fluid samples, genetics, and clinical assessments to find ways of tracking disease progression and improving diagnosis
- Neurological care and support: framework for action 2020-2025 can be found at https://www.gov.scot/publications/neurological-care-support-scotland-framework-action-2020-2025/
[i] Diagnosis Across the Spectrum of Progressive Supranuclear Palsy and Corticobasal Syndrome
Edwin Jabbari, MRCP1,2; Negin Holland, MRCP3; Viorica Chelban, MRCP1,2,4; et al JAMA Neurol. Published online December 20, 2019. doi:10.1001/jamaneurol.2019.4347 https://jamanetwork.com/journals/jamaneurology/fullarticle/2757604?utm_source=twitter&utm_campaign=content-shareicons&utm_content=article_engagement&utm_medium=social&utm_term=122019#.Xfzw_lm-9kY.twitter