The Brighton and Hove Memory Assessment Service (MAS) supports people before, during and after diagnosis.

At the beginning of 2020 we spoke to Elspeth, one of our service users, about the events that led to her Alzheimer’s diagnosis and she explains in her own words how much joy she now gets from life.

“You see, I’m okay at talking but I can’t do things. I can’t write, I can’t spell anymore.”

“I started to have disasters, in my in my flat, I was just turning on the bath water and leaving it, and I used to flood the floor. I had terrible disasters with my cooking – I nearly burnt the building down – and it was absolutely terrifying. And I thought this isn’t normal loss of memory. This is quite serious loss of memory. So I just sort of realized then that I think I probably might have Alzheimer’s.

“When I said, ‘I’m forgetting things, all sorts of little things’, they would say, ‘don’t be silly, we all do that’. They dismissed it.

Elspeth: Am I right to tell you all this?
Here: Yes, please do!

“Well I said, ‘I’m sorry, but I’m going to the doctors and I’m going to say I’m forgetting everything’.

“And (the doctor) said, ‘would you like to go and have a little test?’ It’s like a little, ‘what does this remind you of, and will you draw something’ – and I didn’t do terribly well. Then she said, ‘we could offer you a scan’ and I said, ‘yes, please give me a scan’ – because I have to know.

“What was my reaction to getting the news? It was almost relief, because there’s a reason for my behavior. I never once had a fit about it and thought ‘Oh, my God’. I thought, well, it is what it is.”

Everything seems so lovely to me now

“I’m really, really happy. It’s one of the nicest times of my life with all the struggle and stuff I’ve had. I’m not a sort of miserable person.

“I’m more aware of nature. I just bought a pound bunch of daffodils and they’ve all opened out in my lounge, and I can’t think of anything more beautiful to see in the morning when you wake up, the simple things.

“I said to Penelope the other day, ‘this must just be like when you’ve taken LSD!’ And she said, ‘My God, I hope you don’t really know what that’s like!’ She nearly collapsed when I said that!

“Everything seems so lovely to me now. Everything is there, but you have to know how to join the club first. Some will just go off and say, ‘no, I don’t want to do that’ or ‘I don’t want to go’. And that’s such a shame if I don’t try it, isn’t it?”

What has made the difference to you?

“Just me appreciating life. Because I’m not going to have it much longer anyway at my age, and I just want to cherish every day.”

We’re very proud of our colleagues and the work they do for our communities and healthcare.  This is part of an ongoing series of stories from the people that work at Here and all of the different services we deliver.

Today we meet Jamie Tulley who is a Patient Care Advisor (PCA) in the Brighton and Hove Memory Assessment Service. Jamie has been working for Here within MAS just over two years.

Why did you choose to work in the Brighton and Hove Memory Assessment Service (MAS)?

Back in 2014 I worked in a care home looking after residents with Alzheimer’s and dementia, and I wanted to get back into that line of work and for the NHS as well. When this job was advertised I went for it and thankfully got the job.

Tell us more about your role as a Patient Care Advisor (PCA)

We deal with incoming calls, booking in people to arrange of appointments, whether that’s from the start of the service with the first contact call, right through to the assessments and things like that. I do a lot of administration as well, like cross checks, dealing with the day to day organisation as well, making sure it’s running. But I’d say the main thing is being that first port of call in terms of dealing with patients predominantly, and loved ones as well.

What would you say to someone thinking about a career in the Brighton and Hove Memory Assessment Service (MAS)?

I think it’s certainly a great place to work, especially if you’re a kind and compassionate person. I think we give back to our patients and loved ones, especially with it being such a really interesting diagnosis as well compared to others. There’s sort of a taboo around Alzheimer’s and dementia. So I think it’s a very rewarding job and service to work for.

How would you describe MAS in one word?

I think I’ve already said it but I would probably say compassionate. Again, I think it’s not only our patients that we’re caring for, but it’s also for the loved ones as well. So, I think the word compassionate probably stands out more than others.

I wrote an article for The Royal College of Psychiatrists regarding our memory assessment service and some of the ingredients that make this a service that delivers exceptional performance as well as compassionate, holistic care.

Many triumphs in one setting have been tried somewhere else only to meet disaster. We’re incredibly proud of what we – Here, a social enterprise with a mission to deliver exceptional care, for everyone – have achieved with our memory assessment service in Sussex. But if what we’ve learnt in Brighton and Hove can’t carry to Basingstoke and Bury, why should I even write this article?

A clue might be in a great paper by Mar Dixon-Woods and team about efforts to reproduce successful patient safety initiatives. “Without understanding the ingredients of success” the Health Foundation funded paper writes, “efforts to reproduce an improvement programme risk mimicking its superficial outer appearance, but not replicating the essential processes that actually make it work.”

So in an attempt at getting to those ingredients of success, here are four key learnings from our journey.

3. It’s always about the patient journey

Adding another step to the pathway may seem counterintuitive as it could have extended or delayed patient journey times. However, this addition improved patient journeys and therefore ensured we understood our patients needs and support any barriers they might encounter whilst travelling through the service. Our MSW counselled people, listening to their concerns and explained how they would be supported if a diagnosis was made. Understandably for many the fear of a diagnosis was a barrier and the thought of clinical assessment and its outcome was something to fear and avoid.

This World Alzheimer’s Day we are encouraged to raise awareness by challenging the stigma around dementia, to look beyond the diagnosis and to see the whole person.

Earlier this year some of the brilliant team from Brighton and Hove Memory Assessment Service (MAS) showcased a poignant art installation at the Jubilee Library in Brighton.

The display was focussed on challenging peoples perceptions of who dementia affects and encourage people to see beyond the diagnosis.

Prior to the event MAS asked their patients the question:

About the Brighton and Hove Memory Assessment Service (MAS)

Brighton and Hove Memory Assessment Service is more than an assessment service, offering both clinical care and social support to those people who are diagnosed with dementia.

It can be a worrying time when you or someone you love begins to experience memory issues. MAS is here to navigate all the ups and downs of adapting to new circumstances, helping people and their loved ones get the care they need to live their life well.

Learn more here.

Get in contact with your GP for a referral.

We are working with LGBT Switchboard to understand the needs of LGBTQ+ people in Brighton and Hove in relation to their memory problems and dementia care.

This month highlights the importance of reducing the stigma surrounding dementia and Alzheimer’s disease.

The diagnosis process is different for everyone and medical appointments and diagnosis are only a part of the picture.

That’s why services like the Brighton and Hove Memory Assessment Service are here to navigate all the ups and downs of adapting to new circumstances, helping people and their loved ones get the care they need to live their life well.

What is the Brighton and Hove Memory Assessment Service?

Brighton and Hove Memory Assessment Service (MAS) is more than an assessment service. We offer both clinical care and social support to those people who are diagnosed with dementia.

We help people who are experiencing problems with their memory to find out what’s going on, and to access the right treatment and support.

Learn more here.

Get in contact with your GP for a referral.