How does our Memory Assessment Service provide personalised care that makes a real difference to people?

In my first week at Here, I was sharing space with the Brighton and Hove Memory Assessment Team. I was privileged to hear one side of a conversation between one of our Memory Support Workers (MSW) and a person who was accessing the service for the first time.  

Can you say a bit about how personalised care is the foundation of the MAS?  

Our Memory Assessment Service purpose is “To help me and my loved one get the care I need, to live my life well”. We designed the service around the understanding that everyone is different with different needs, but they also have strengths and assets. Having a memory assessment can be scary, we wanted to acknowledge this and think about how we provide our support to be built around people with the aim of offering the best experience for them.

How do we apply those principles in practice? What does it practically mean in developing and running the service?  

The main difference with the way we work is that we offer wrap-around support from a named Memory Support Worker (MSW) from the first contact call to assessment and care planning. That first contact call is really important. It’s a chance to build a relationship with someone. Our first contact call template is designed based on What Matters To You (WMTY) principles.

We ask the person about what they’re experiencing, what’s important to them, and who is important to them.  

This lets us offer support based on their strengths and needs, for example, are they struggling with personal care or food, getting out of the house. These things can affect someone’s general health as well as their memory, and support offered at this point can really help people while they’re waiting for their assessment.  

‘What’s important to you’ helps us understand what a priority for them in terms of diagnosis, treatment and support options. And ‘Who is important to you’ helps us to understand their support network and identify if they may be isolated and need extra outreach, or if families and loved ones need support also.  

People get a letter with the details of their named MSW who will be with them throughout, and when they have their appointments with the clinician, the clinician will have access to the records from the MSW and vice versa, so it is seamless for the person. 

If they do have a diagnosis, they then have a Care Planning appointment with their named MSW, who they will have known since the beginning, and the relationship they have built up helps create a really tailored care plan.  

What roles do we have and how are they different? How do we train and support staff in MSW roles?

We developed our Memory Support Worker role to provide the pre and post diagnosis support and to be that named person all the way through.  

When MSWs join us, they have a programme of shadowing across all the other roles in the service, from admin team to clinicians. They experience assessments and diagnosis appointments, and MDT (how the diagnosis is formulated). Then they shadow experienced MSW to learn about the different call types and how the templates guide you through.   They see some of the scenarios that they might experience in their new role.

They learn about communication styles and how would you alter your communication style depending on the person and what they need.  

They then have Guided Practice with an experienced MSW to either help during the call, or to feedback afterwards. This is helped by our technology allowing three-way calls.  All MSWs have monthly 1-1 supervision and monthly group supervision with other MSW.

Group supervision is an opportunity to discuss cases, share learning and support each other, and to think about potential changes that we can make to improve the service.   

Are data and case management systems structured any differently to facilitate the WMTY approach?  

We use SystmOne (S1) and the data and analytics team at Here are experts in design and use of S1 in clinical services and this has allowed us to build and continually evolve our templates in S1. As all staff are S1 users, all the relevant information about people we work with is accessible to everyone in the team.  

Each appointment type has its own template which we’ve created and adapted as we’ve developed as a service. For example, with the First Contact Call template we have added in fields for demographics and reasonable adjustments to make sure we’re thinking about what the person might need, and offering adjustments such as the type of information they need or help getting to appointment, if someone’s religion means they need appointments on certain days, or if they have a preference for the gender of their clinician, and what their interpreting needs are.  

On a service level we use PowerBI for reporting on deliverables and KPIs, but we also do additional analysis and add that to knowledge gathered through patient experience. This can help identify and address gaps, for example, we did some analysis by demographics and identified that the service possibly wasn’t meeting the needs of our LGBTQ+ patients.  

We approached Switchboard Brighton & Hove LGBT Switchboard about collaborating together to understand better the needs of the local LGBTQ+ community. As a result of this learning, we then made changes to the language we used, it influenced our collection of demographic data by placing more importance on this group to help us provide more personalised care and support and in signposting/referring people to the most appropriate services for them. This is a start, and we want to carry on listening and improving our service in this way.

What challenges can it throw up, if any?  

Everyone will be aware of the pressures that health and care, and voluntary sector organisations are under, and this does affect what we’re able to do. We try to be as proactive as possible, but there may not be capacity in the wider system to respond to this.  

In terms of running the service, there is a risk of an emotional toll on staff because of the engagement with individuals that we offer. Helping our team to learn how to manage the impact on themselves of this work is key and I mentioned above the importance we place on 1-1 supervision and group supervision, which is really important for that emotional side of things as well as the professional or practical.

We also encourage informal peer support such as team chats, colleagues giving each other opportunities to debrief after difficult calls, and support from managers to take time to process situations if needed.  In terms of leadership and always seeking to grow our practice, and develop our service, the NHS Sussex Personalised Care Network is a way to connect with others locally who are doing similar work.  

What would be your recommendation for others starting on this journey?  

In terms of developing a service in this way, it’s important to listen to the people using the service and take on board their thoughts and feelings.  

When working with individuals, the key is really active listening and being purposeful about what recommendations or support offered, not offering all the things on the list, but focusing on one step at a time and going at the person’s pace.  

Leadership in your organisation is key too, they have to really get and be committed to personalised care.  

It’s the stories that bring it to life, showing the impact that you can have by working in this way.  

When I worked as an MSW, I visited a person who was very isolated, couldn’t cook for himself, couldn’t get out because of steps up to his front door. We worked closely with Ageing Well service in Brighton & Hove, and they helped him with cooking, shopping, lunch clubs and then ultimately with a move into supported accommodation. He has a mobility scooter now and goes out nearly every day. He’s in a much better place.

Listening to what he wanted and what he was missing out on has had a massive impact on his quality of life and therefore on his condition.  

I think it’s important to remember that people are not just their health condition, and that their wider social situation can have such a huge impact on their health and wellbeing.  

Dementia is progressive, so it’s essential to focus on quality of life.

People can still live well, and it’s so rewarding to be able to help that happen.  

The Sussex Personalised Care Network aims to: 

• Improve workforce knowledge, skills and confidence in personalised care. 

• Connect staff across the Sussex to create opportunities to grow, learn and lead on personalised care together. 

• Share experience, resources and practical solutions to challenges. 

• Demonstrate impact of Personalised Care for people, workforce and system. 

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.