A day in the life of a PSPA helpline manager
By Jules Brown, PSPA helpline manager
As the UK’s only charity dedicated to creating a better life for everyone affected by progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD), demand for support and information is ever-increasing. Helpline manager, Jules Brown talks us through a typical day in her role
What is progressive supranuclear palsy (PSP)?: Progressive supranuclear palsy (PSP) is a complex neurological condition that progressively affects movement, balance, vision, speech, and swallowing. PSP gets its full name because it is a condition that progresses and gets worse over time (progressive); it damages the parts of the brain that control eye movements (supranuclear) and causes muscle weakness (palsy). PSP belongs to a category of disorders called Atypical Parkinsonian Disorders. It often gets misdiagnosed as Parkinson’s disease early on due to some overlapping symptoms like problems.
What is corticobasal degeneration (CBD)?:
Corticobasal degeneration (CBD) is a progressive neurological condition. It presents complex challenges, not only to people diagnosed but also to their families, caregivers, and the healthcare professionals who support them. At its core, CBD involves the degeneration of brain cells caused by the accumulation of abnormal tau proteins. This leads to a range of symptoms affecting movement, which usually begins on one side of the body, as well as affecting cognition. CBD may also affect speech, memory, and behaviour.
One core service the charity delivers is a helpline which is open 9am to 9pm, Monday to Friday. The helpline, which is often cited as a ‘lifeline’ is available to people living with PSP & CBD, as well as carers, family members and health and social care professionals too.
Julia Brown is PSPA’s helpline manager and works alongside a team of helpline care navigators and helpline volunteers. To give insight into the challenges with PSP & CBD face, Julia takes us through a typical day.
9AM
As soon as I log onto the phone system a call comes through. There are days when it is one call after another, and it can be three hours before I’m able to step away from my desk.
Today the caller is a carer to her friend and is starting to struggle. Her friend has become increasingly reliant on her and she doesn’t know what to do. I listen. It’s important we give people time to get everything off their chest. We don’t have any time restrictions on calls. I give some suggestions, including getting some paid carers in to help in the mornings and evenings. I share with her how it works and who to contact. I also explain the funding options, including the threshold for social services support.
11AM
With carers the biggest thing we get called about is carer stress. That stress is so often compounded by not knowing what support is out there, or how to access it. I answer the phone to a lovely man whose wife has PSP. His wife was admitted to hospital last month. She has further deteriorated and is no longer mobile. He’s also seen a rapid deterioration in her cognition. The hospital wants to discharge her to a care home 15 miles away. I really feel for him. He is entirely overwhelmed and doesn’t want his wife to be placed in a care home he can’t get to.
We do get several calls from people in crisis. People often don’t want to look too far ahead. We recommend trying to anticipate needs as much as possible. He tells me his daughter is going to support them in finding a care home, he asks if I can chat to her as she is visiting them today.
12 PM
I chat with the man’s daughter about selecting a care home. While we’re on the phone we look at some care homes in their area and I explain the CQC rating. We can’t recommend specific care homes. She is going to make some calls. I give her some suggestions on questions to ask care homes.
1.30PM
I speak to a lady whose dad has recently been diagnosed with PSP. She has read the information on the website but is finding it hard to adjust to the news.
We often get calls from family members of people who are newly diagnosed. While the information is online, having a conversation enables us to dispel any myths and cut through the jargon.
Her dad was a very active man and only retired last year at 63. He was looking forward to travelling and spending time with his grandchildren. The daughter tells me that while his balance isn’t great and he has become quite apathetic, he is otherwise okay. I try to reassure her that people can live as well as possible with PSP. I give them details of a PSPA support group in their area so she and her dad can meet other families affected by the condition. I also email her our information leaflets that will be helpful for them to work through.
2.30PM
A man who is living with CBD wants to apply for Personal Independence Payment (PIP) benefit. We get a lot of calls about benefits. It can feel like such a minefield and people don’t know where to begin. He feels overwhelmed by the form as it is over 30 pages long. We talk through the form, how to answer the questions and I suggest I refer him to the Department of Work & Pensions home visiting service, who can support with completing the form. I make a note to call him back in a few weeks to check on progress of his application.
3PM
I get a call from a speech and language therapist who wants to arrange some training on PSP & CBD. The helpline runs training sessions for all healthcare professionals. I talk to my colleague Debra, who is going to get it booked in and run the course.
3.30PM
A lady calls who is in her early 80s. She is a carer for her husband who has PSP. She sounds so tired. I don’t know how she has managed for so long with no support. The couple don’t have any children and have been struggling for several years. She says she sleeps with one eye open in case her husband attempts to get out of the bed. When you are a carer and worn out, to talk about how you are struggling can be hard. Many people feel it is wrong to say they are not coping. It’s a barrier we are always trying to overcome. We say to everyone that to ask for help is a sign of strength. Everyone needs help, especially if you are living with PSP or CBD. I suggest to the caller that I can refer her for a carers assessment. She’s worried they will say he has to go into a care home, which neither of them wants. I reassure her that no one will do anything she does not want, and that by having a care package in place it should make life a little easier to manage. As soon as the call ends, I make the referral.
Care packages can make such a difference, but social services are struggling. There is also a lack of paid carers which is putting further pressure on the system.
On the helpline we hear so many stories of people who are struggling to get reliable paid carers. People don’t want to see different, unfamiliar faces in their homes every day. I ask the caller if I can refer her to our Link Volunteer Service. I explain to her how it works and that a link volunteer will call or visit her, providing her with a space to offload. She thinks it could help her and agrees for me to make a referral.
The caller is very good on the computer, so I tell her about the online carers groups that are a brilliant source of information and support, including our online pamper sessions we run for carers, to help them take some time out to look after themselves.
4.15PM
The daughter I spoke to earlier calls me back. They’ve managed to secure a care home in their town. I’m so relieved for them. I ask the daughter if she would like us to do an education session on PSP with the care home staff. This is something our incredible educational volunteers do. She would like me to get something organised.
4.45PM
I take a call from someone who wanted to say thank you for the support they’ve received. This is a lovely way to end the day. We are just pleased we can be here for people.
Get support
If you, or someone you love is living with progressive supranuclear palsy (PSP) or corticobasal degeneration (CBD) please reach out for help and support.
Our helpline is open Monday through Friday from 9am to 9pm on 0300 0110 122 or email helpline@pspassociation.org.uk
