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A day in the life: Cathy Moughton, PSPA helpline care navigator

Each year, the helpline for UK charity PSPA responds to approximately 5,300 enquiries, providing support and information to people living with PSP and CBD, two rare neurological conditions. To give an insight into this valuable work, Cathy Moughton, helpline care navigator for West and South-West England describes a typical day

PSPA is the only UK charity dedicated to creating a better future for everyone affected by PSP and CBD.

Progressive supranuclear palsy (PSP) is a rare neurological condition that can cause problems with balance, movement, vision, speech and swallowing.1

Corticobasal degeneration (CBD) is a rare condition that can cause gradually worsening problems with movement, speech, memory and swallowing.2

Hello, I am Cathy Moughton, a helpline care navigator for the West and South-West of England.

I started working at PSPA three years ago after previously working in the local authority and social care sector. I enjoy the role as it is so varied—no two days are the same.

My day always includes responding to calls and emails coming into the helpline. I enjoy being able to listen to people and support them with their questions about symptoms, issues surrounding their diagnosis or ongoing care support, and giving carers the time and space to discuss their caring role.

As a wider part of the helpline care navigator role, I also spend time raising awareness and knowledge of PSP and CBD among health and social care professionals. This includes forging partnerships and close working relationships with key health and social care professionals in my region, who support people living with a diagnosis of PSP or CBD, such as neurologists, Parkinson’s nurses, speech and language therapy teams, occupational therapists and physios.

I proactively contact professionals in my area, either by phone or email and arrange a convenient time to discuss the services we and they provide in more detail and the best ways of working in partnership to ensure that we are able support as many people with PSP and CBD and their carers as possible. This may include delivering an awareness and education session to a wider team. We often provide these sessions via Zoom as this enables us to join team learning sessions to give them an overview of both PSP and CBD and also, importantly, of the information and support PSPA provides.

Linking up with health and social care professionals and talking with them gives me the opportunity to work collaboratively. This means I can gain an understanding of support and services available in an area and how referral processes might work, enabling us to ensure that people who contact the helpline are receiving the right support at the right time.

Another element of my role is attending hospital clinics. I currently attend two movement disorder clinics, one in Southampton and, more recently, one in Devon. I am coordinating attendance with other clinics in my region with the hope that these links will increase.

Being at clinic allows me to meet people with PSP and CBD and their carers in person, and to gain an understanding of how diagnosis is made. As well as aiding my understanding and awareness of the conditions, meeting people at clinic living with a diagnosis of PSP or CBD gives them a sense of relief that there will be someone at the end of the phone who understands their situation. I always encourage them to contact the helpline where they won’t have to explain their experiences, as is often the case when people meet new health and social care professionals.

Find out more about PSP and CBD: www.pspassociation.org.uk

Helpline: 0300 0110 122 / helpline@pspassociation.org.uk

A day in the life is a RARE Revolution rare disease awareness campaign open to people living with a condition, as well as carers, healthcare professionals, scientists, charities and advocates. If you would like to contribute a piece, please contact rpender@rarerevolutionmagazine.com


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