It’s 5pm, the tea is freshly poured as we all gather to have an informal conversation about the MDSC’s (the Centre’s) early days.
I’m joined this early evening by Lynn, who was the Centre’s first Physiotherapist, and by Ruth, our Chair of Trustees. Both have been involved with the Centre since the very beginning, have seen many developments over the years, have a passion and an enthusiasm that surpasses many, and genuinely care and take pride in their roles. With all of the hard work that went into the early years of the Centre, they won’t mind me saying that there are a few covered-up grey hairs in the mix! Sorry – that’s the first secret out!
We have a whole decade to reflect upon, look back and to see how far we’ve come. It’s been an exciting journey. There have been good times, challenging times, and a lot of changes along the way, but it is evident that the Centre, whilst built with the hearts of many, still thrives with the love that continues to be poured in through the various people involved. Lynn and Ruth are by no means an exception to this.
Lynn, a neuro physiotherapist, like many, had little to no experience with Muscular Dystrophy (MD) when she was first approached by the Centre’s set-up committee through Physio Function. Granted she had seen a few cases previously, but she still got a little surprise when she first set eyes on a pair of “crazy” scapulas like she’d never seen before!
“Unless you’ve seen it, you don’t know, do you?”
Lynn was initially asked to treat founding trustee, Karen Bayliss “off the record” towards the end of January 2013, as a kind of initial assessment of her skills. Lynn remembers that session very well, saying,
“I remember my first treatment at the centre, not just because it was the first but also because I had a really sore throat and felt awful! Natasha [our first Centre manager and fundraiser] had been working so hard I didn’t want to let anyone down. Thinking about Covid and how things have been over the past few years, it seems a little crazy looking back now to have carried on when feeling unwell. I had to go to hospital the next day with something called a quinsy [a throat infection] and future appointments had to be cancelled. I felt awful, I’m never usually ill, I hardly ever call in sick…”
Lynn also shares that from a physio’s point of view every treatment back then was a “blimming” initial assessment because every single service user was new to the Centre, apart from a handful that had transferred down from NMC Winsford, the only other independent neuromuscular support charity in the UK (more on that shortly). Ruth recalls there were around 50 service users who joined in that first year so a lot of these “blimming” assessments had to be done, and it was just Lynn running the show until she was joined by Ellie, a graduate physiotherapist that summer.
“It’s just hilarious [how small we were] compared to how many hours we do now” says Lynn.
Indeed, I can count at least 12 therapists on our books now – I hope I haven’t missed anyone off… ‘The Dirty Dozen’!
Lynn mentions she was in contact with NMC Winsford quite regularly, using their documentation and connecting with their therapists for support until that involvement naturally petered off. Lynn also notes that another founding trustee, Jane Field, was a great support. Some of the Centre’s service users also used to attend Winsford prior to the Centre opening, so it was only natural that their case notes were handed down and it was useful to be able to discuss treatment options with therapists who had experience with MD and these “crazy” scapulas!
“Ellie and I went up to Winsford for a visit. It was really interesting to see the Centre that was the driving force behind MDSC [formerly NMC Midlands]. It was this amazing centre that had access to an adjacent hydrotherapy pool which we were hugely jealous of. It was great to see how they worked and what else other than physiotherapy they were able to offer their service users. With the knowledge we gained from their experiences together with what we were already starting to see our service users benefitting from, the development of our own approach at the MDSC was in the making”
Ruth agrees and starts to talk about her experience with physio,
“Even though I started working at the Centre straight away I didn’t start having therapies because there were so few therapy hours available, and I was involved in a pilot project at the Queen Elizabeth Hospital [where they followed] the same approach as Winsford. As experienced neuro-physiotherapists like Lynn and Ulrike joined our team and started to develop a deeper understanding of the various types of MD, they started developing further individualised, person-centred approaches. When I started therapies at the Centre, they developed a tailored physio plan for me as well.”
After the initial help from a successful organisation already up and running, it seems there was a natural evolution of the early physio team in their approach which is why the Centre makes such an impact in its therapies for service users.
But it’s not only that which makes the Centre feel unique. I know from a recent conversation with founding trustee, Karen Bayliss, that the more informal social aspect was something she was very keen to implement, hence why the Centre also has this friendly, warm and integrated family like atmosphere to it, which is important to keep even as we grow.
Ruth gives a little insight into the logistics surrounding setting up the Centre:
“It was really interesting that first couple of years because you’re really absolutely starting from scratch. I mean Winsford had kind of given us an idea of what they did but they started 22 years before so were well established. We didn’t have the funding that they did to run a full service and everyone besides Natasha and Lynn were part-time volunteers and everything was done on paper. So we were [providing therapies one to two days] a week. You are trying to work with volunteers who are running reception and then also trying to find more physios. How do you bring more people on to expand the service when you have very little funds, and you’re trying to get more funding at the same time? It’s a huge logistical build from the very start.”
Lynn adds that for her, the issue was always the pressure of appointments. It would be ideal if someone could get an appointment every fortnight in the early days, but it was frequently every 3, 4 or even 6 weeks.
“There was always that fight for appointment times…”
It seems there was a lot more juggling to do with regard to managing who should get seen and how frequently, taking into consideration also the limited resources not just financially speaking, but also resources on the ground.
Ruth was keen to find ways to run the centre efficiently with part-time volunteers and staff, and one of the things she thought of was to take the scheduling of appointments online, and that was soon followed by other services. This is another prime example of the Centre’s organic progression, which helped tremendously with challenges early on.
“I think technology really helped us in this regard because it allowed us to [run with less money and staff]. If it’s online, then anyone working at the Centre can securely access it which opens up the possibility of more people being able to manage scheduling and work remotely. I mean, simple things like that make a huge difference.”
From a therapist’s point of view, Lynn speaks about how the introduction of the online diary was also beneficial regarding last minute cancellations and to remind her of who she has in that day for example, so she can familiarise herself and get prepared.
In the beginning, when times were hard, everyone was “in it together” and just trying to keep everything running. Ruth says it was thanks to a dedicated team and supporters, especially a core of dedicated service users, who kept people like herself going, and Lynn agrees, saying that this is one of the reasons why she loves it so much,
“The service users were (and still are) so passionate and grateful for the service being provided that obviously they wanted it to continue, and this had a positive knock-on effect with the staff providing the service.”
And as the last sips of tea are taken, the conversation lovingly ends on a rather touching and somewhat emotional note. There are a lot of mutual exchanges of warmth and thanks between Lynn and Ruth. Ruth mentions that even as a contract physio Lynn has never acted like one, and we simply wouldn’t be here today without her and Lynn mentions how dedicated Ruth has been, managing the admin and financial side of things over the years. It was honestly beautiful to bear witness to.
Lynn uses the analogy of a triangle, describing it as a reciprocation of 3 points – service users, managerial/admin team and therapy team. We all exist to this day because of one another. We all benefit from each other because we all have each other, whether that’s for support or to fall back on, or whether that’s to drive one another forward in the most motivational and inspiring way possible. Isn’t that just the most beautiful of things? A pure definition of harmony.