The Leeds Teaching Hospitals NHS Trust

Q&A with Samantha Oakes, Patient and Family Support Worker - MND Care Team

29 September 2022

This week we heard the fantastic news of Sir Kevin Sinfield's Ultra 7 in 7 Challenge. Announced on Rob Burrow's 40th birthday, this is Sir Kevin's toughest marathon challenge yet, and will see him raise funds for several Motor Neurone Disease charities, including the Leeds Hospitals Charity appeal to build the Rob Burrow Centre for MND in Leeds.

This is the visionary new home for the MND Care Team, which aims to build a purpose-built environment for patients with MND. Earlier this week we caught up with a new member of the MND Care Team, Samantha Oakes, who told us what it takes to take on a brand-new role with the team and what she would love to see in the centre of the future.

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How did you start out in your role?

I have just retired and returned. My previous role was as a nurse specialist for post-mortems, which I did until July 2022, when I retired and then started this brand-new role with the Motor Neurone Disease (MND) team.

How has this new role come about?

Patients with MND have a lot of support within the multi-disciplinary team, including physiotherapists, occupational therapists, specialist nurses, psychologists, neurology consultants, speech and language therapists – to mention just a few! So while the patient has a big team of focused clinical support, a gap was identified for more general support that extended to the family as well. A lot of family and carers need support too, so my role is looking at where the gaps are in the care we provide and where we can bridge them.

I am still really new and it is a role that is going to evolve in the future. From what I've seen so far, the multi-disciplinary team are extremely patient and family focused, really holistic already. But they each have their own specialist roles within the team. So my role is more of a general support role - listening, guiding, and making sure that the patient and their family has the right access and know about every service they're entitled to. I also work alongside external agencies like hospices, which provide a lot of support as well.

What attracted you to the role?

At first, I thought I'd retire and go work in a coffee shop or a garden centre or something. But then I thought, no - caring is in my soul. It's part of who I am. I realised I've got a lot of transferable skills - most of my care was looking after families of babies and children that had died – whether that was expected or suddenly. So I've got a lot of experience with working with distress and emotional trauma, using therapeutic practices such as memory making. This new role with the MND Care Centre team really lent itself to the skills I've developed over my career. And I was really keen to learn new ones - supporting people with life-limiting illnesses and what I can do to enhance their quality of life and support their families and children.

How have you found your new role so far?

I worked in my previous role for 20 years, so it's been quite daunting to suddenly become the new person! But everybody in the team is so welcoming, supportive and friendly. When I applied for the role I wanted to work in a team that was really patient-focused and worked collaboratively as a true team and that hasn't disappointed at all.

I am looking at ways to develop the role and see where I can add to the patient and family experience and the team are really keen to help me achieve that and make the role a success. It's going to be an exciting few months whilst I find my feet!

How have you found meeting the patients and families that you've met so far?

They go from being really motivated, embracing life and seizing the moment one day, to really struggling and finding things incredibly difficult the next. It is a very distressing disease, and really tough seeing people suffering with it - there are so many losses along the way.

And yet, the care and the input that the families give is just humbling. To see the love and support that partners and their children and their friends bring - how they pick up the patient and carry them through their journey - is incredibly moving to see. All the patients I've met have said how well they feel supported by the MND Care team.

What is the most important thing about creating an excellent patient experience?

Communicate openly, gently and honestly - and listen. Empower the patient and their family in their care. Let them take the time to consider their choices and options. And be kind. It’s that simple.

What would you most like to see from the new Rob Burrow Centre for Motor Neurone Disease that would make a difference to patients and families in the future?

The outpatients clinic that the patients and their families come to it at Seacroft Hospital on N Ward is just not suitable. Patients and their families often have to hear bad news, and the rooms they are given this in are small and cramped, sometimes with no windows. There's nowhere private for them to go and sit if they are struggling or they're upset. I'd love to be able to set up support groups and have a space for doing memory-making activities but there's nowhere appropriate for anything like that.

I’d love the new Rob Burrow Centre to be a purpose-built safe space for patients and their families, where they can come in to have the care they need but also to just drop in for a chat and a cup of tea with someone who understands what they’re going through.