Unplugged

When we moved house at the end of April, switching utilities was relatively smooth. Building a new health care team is going to take considerably longer.

We set a date to wave goodbye to United Utilities and hello to Anglian Water; within two days Sky made sure our broadband and TV were connected to all the gazillion channels we’ll never have time to consume; and Octopus Energy welcomed us with open arms – all eight of them! I’d been able to plan the switches in advance and make all the right calls.

So our utilities are all joined up, which is more than I can say about my health care. I timed it badly – I couldn’t get a consultant appointment in Cumbria till 17 May – by which time we’d already moved and the Sky engineer was on his way to beam us up in Suffolk.

I hadn’t seen a consultant or a Parkinson’s specialist nurse for more than a year. I couldn’t register with a GP until I’d actually moved into the new address. Time from GP referral to seeing a Parkinson’s specialist nurse – two months. Estimated time for an NHS neurologist appointment – four months. Save time and go private?  That’s four months too!

I can’t complain – there are many other people newly referred who are having agonisingly long waits just for confirmation of their diagnosis. Four years on, I still remember that period of limbo with astounding clarity. Further down the line, other people whose symptoms have escalated urgently need their meds reviewed.

My symptoms have taken a nosedive – especially the fine motor skills required for washing, drying and dressing. It’s all so bloomin’ slow! The spikes and troughs between doses of medication are more pronounced, so I can’t plan exercise sessions as well as I could. The glass-half-full girl in me says that this is a result of the anxiety and stress of moving and is not a permanent disease progression. But I’d like a health professional to reassure me of this and help me get more of my day back.

Joined-up care

It shouldn’t have to be this way. Just like those utilities, we should be able to unplug from one care team, move across the country and immediately switch on in a new place. Without a twinge of guilt that we are jumping the queue. It all needs to be more joined-up.

Hope is on the horizon in the Parkinson’s Excellence Network, which is gathering and sharing resources to enable health and social care professionals better meet the needs of people with Parkinson’s and their families across the UK. Oneof theNetwork’s four national priority programmes is Integrated Multidisciplinary Care (IMC), for which the vision is:

“We want all people with Parkinson’s to have timely access to best practice, person centred, integrated multidisciplinary care. We want them to have this access no matter their background, identity, circumstances, or where they live in the UK. This means getting the right care from the right expert professionals at the right time.”

You can read the full vision statement here.

Those two words “timely access” caught my eye.  Dr Rowan Wathes is Associate Director of the Parkinson’s Excellence Network and chairs the Steering Group for the IMC programme. I asked her how things might run more smoothly for people with Parkinson’s moving between health providers. She said:

“Ideally moves should be facilitated by the person’s original Parkinson’s service, with the clinician (usually the Parkinson’s nurse or the consultant) handing over directly to the Parkinson’s team in the new area. We have heard of this happening in some areas but it’s clearly not happening all the time. If someone is struggling to access the team in a new area and is not getting anywhere with their GP, we would advise them to contact the Parkinson’s UK helpline. In some areas, people with Parkinson’s can refer themselves directly to the Parkinson’s nurse and where this is possible we can provide the contact details of the local service.”

Connected

Throughout all this upheaval, one constant has really kept me connected. It’s plugging into Neuro Heroes Zoom classes twice a week. Regular readers may remember (I’m only human after all) the hard but fun work this team of neuro physiotherapists do to keep me balanced and active. Even if I’ve not been able to do the live sessions I’ve picked up on some You Tube tasters they’ve recorded with Parkinson’s UK.

One new instructor on the Neuro Heroes block is Milly Khan.

Wearing her NHS hat in Guy’s and St Thomas’ NHS Foundation Trust, Milly persuaded TV Body Coach Joe Wicks to produce a 20-minute high intensity workout for people with Parkinson’s.  She said:

“Joe was great to work with. He really listened and watched. I think he gained a deeper understanding of what people with Parkinson’s can do and what we need to do to slow down disease progression. I hope we’ll have many more opportunities to collaborate.”

Play>Layla>Eric Clapton> from the album Acoustic Live at MTV Unplugged.

Sometimes being unplugged isn’t such a bad thing. Eric Clapton has it down to a fine art.