As part of our mission to support families affected by mitochondrial disease, we believe that should cover financial support too. Understanding what benefits you might be entitled to, and applying for those benefits, can be both stressful and confusing, especially when you’re already dealing with the emotional and physical effects of the disease.
So we’re delighted to welcome our new Benefits Advisor, Chrissy, to the Lily team. We caught up with her on her first day to see how she’s planning to help mito patients and their families navigate the tricky topic of financial welfare.
Welcome to the team Chrissy! Can you tell us a little bit about your background to start with?
I started working in social services in Newcastle back in 1989, then in 2000 I went into local authority as a housing and homelessness officer, before moving back to social services in a management role. Whilst doing this I was given extra responsibility for managing admin staff for welfare rights, and I quickly realised this was what I really wanted to do. So in 2002 I worked first with children with disabilities, then in 2007 I had the opportunity to move into a very specialised role. I became an HIV specialist welfare rights worker, which was a multidisciplinary, team-focused role working alongside clinical teams, psychology teams and social workers, supporting people in the whole of the North East.
I’m in a very similar role now, for three days a week, as a support care coordinator. Essentially this role is about benefits advice for HIV-positive people awaiting or undergoing psychological therapy. It’s a lot more than purely benefits work though – I have to become involved in lots of other social issues like housing, asylum support, accessing treatment, accessing services, debt management… all sorts of information comes out of the conversations I have, and I very quickly become an expert and establish connections and a support network. Communication with the wider team is very important, because we have to work together to get the best care and treatment for patients. I’ll continue doing this role three days a week (Wednesdays, Thursdays and Fridays), and the other two days will be with Mito in Newcastle and The Lily Foundation.
Can you tell us about this new role with The Lily Foundation?
Mondays will be for the mito patients who attend the CRESTA clinic in Newcastle (that’s the Clinic for Research Themed Assessment). In the morning I’ll work from home in support of those patients, and in the afternoon I’ll attend that clinic as a drop-in service for anyone who’s coming for an appointment in Newcastle. Tuesday is an entirely Lily day. I’ll be getting in touch with patients who’ve requested benefits advice and doing basic benefits screenings – so asking some questions about their personal finances, their household income and so on, in order to establish their situation. Then after that I’ll be giving them advice about benefits, what benefits to apply for, and helping them to apply.
How do you think your new role will benefit mito patients?
The benefits system can be quite complicated, so I’ll be looking for the obvious gaps in entitlement, and advising what people might be eligible for. But I’ll also be helping patients to challenge benefit decisions. I’ve already helped two patients today – one’s been refused benefits entirely and the other doesn’t appear to be on the right level of benefits. So I’ll be advising and supporting those challenges. And then as time goes on I’ll report back to the Lily team about what other opportunities we might have to support people.
The general cost of living is impacting most people at the moment. I won’t have all the answers. But I can try and help to maximise someone’s income by reducing their outgoings. I can help by looking at the person’s expenditure and whether there are areas where that can be reduced. Expert debt counsellors might be able to give advice too, for example, if someone needs to declare themselves bankrupt or get advice about Debt Relief Orders. I can help get people to think a little bit differently about how and where they’re spending. Some of it’s very basic. I really think it’s important to try to keep a positive mindset. We’re surrounded by a lot of negative news right now, and it’s impacting on our moods. But I believe my glass is always half full, so I try to help other people to think that way too!
What are you looking forward to the most about this new role?
I’m looking forward to getting stuck in! I’m looking forward to building up my caseload, getting to know the people I’m working with, and the rest of the Lily team. I can’t wait to build up those working connections and relationships as time goes on so that I’ll reach a point where I can pick up the phone and say, “This is what I need in support of this patient, this is what we’re doing and why it’s important.” So far I’ve had a very, very positive start, I’ve had great support from Katie, Alison and Liz, but I’m looking forward to it getting better and better as I settle in. I’m looking forward to trips down to London to see the team in person as well.
Today was my first day, and I’ve had a jam-packed morning – it’s always like that with a new job, isn’t it, when you’re finding your feet. It was a bit quieter this afternoon, but I’m already filling up my diary for the next couple of weeks. It might take a bit of time adjusting to what I’m doing each day, but already it’s feeling good.
And what challenges do you think you’ll face?
The distance from the team and the people I’ll be helping, I would imagine. Working remotely, I expect there’ll be some practical issues to overcome. People will be all over the country so I’ll need to navigate where I can signpost into services across specific regions. There’s a very basic standard across the country in terms of access to social care, GP services etc., but I’ll try to connect people. And if there’s an obvious referral or safeguarding issue, I’ll try to find out how to best navigate that.
Up here in the North East, I know where to start, who to ring and what to say. If it’s elsewhere in the country the process will be the same but I won’t have those local connections to hand to start with. That will come with time. A significant part of this role is also about gathering the evidence I need to support benefit challenges when people are having difficulties – if someone has discussed this with their consultant, or if a referral has been made, I’ll need the evidence from those experts working alongside that patient in support of claims and challenges. That’s where the relationship-building comes in, and those communication skills.
Finally, how did you first find out about The Lily Foundation?
In 2016 I had a colleague who was helping the Lily team as a welfare benefits officer whilst also working for Newcastle City Council. She ran a clinic for mito and motor neurone disease patients out of the Royal Victoria Infirmary. I would help cover her clinic when she was on holiday. This introduced me to a few patients with mito, and to The Lily Foundation, although I knew very little about the charity to start with.
Then in 2019, through this same colleague, I had a last-minute opportunity to help out at the Lily Family Weekend – I had no idea what I was going to, but I covered for her there and gave people benefits advice. Although I was in at the deep end, it was a fabulous weekend and I absolutely loved it – so much so that I went back again last year. And I’m looking forward to being there this year too!
A very warm welcome to Chrissy, and we look forward to seeing her at the Family Weekend too! In the meantime, if you would like any help or advice from Chrissy, please drop an email to [email protected] and Katie will pass your details on to her.