Our Day in Parliament
In my role as ambassador for Action for Pulmonary Fibrosis I’d been asked to speak to some of the great and good from within the Palace of Westminster about the challenges of living with this disease.
The event was to promote the launch of a new report from the charity looking at how best the health service can improve and ‘future proof’ services for patients like me. It’s a truly splendid piece of work but I’ll come to the content later, for now, the practicalities of getting from our home in Leeds to parliament were of primary importance. The obvious thing is; taxi from house to train station, train to London, do event 12:00 – 1:00pm, and then back home in time for ‘Pointless’. However the gulf between what was once possible and my current capabilities were laid bare for all to see on this occasion. It has to be said that without the clear, practical and consistent judgement of Jackie, my dear wife, the day would have been an utter disaster.
Time for some context: A recent trip to clinic disclosed that my lung function FVC had dropped to 34% placing me into the ‘severe’ category and my oxygen saturation on air is down to 90% at rest and goes to low 80s during even the simplest of exertion. Many people have similar readings and it seems it can affect us differently. In practical terms I’m breathless after even the simplest activity.
I have yet to fully accept that breathing in pure oxygen does almost nothing to alleviate this, so I surround myself with every type of cylinder and turn them up or down to match my current needs.
I’m developing a skill for managing my breathing but I’ve a long way to go; it’s hard to keep discipline because instinct takes over when you’re fighting for breath. Tensing up as we get anxious simply compounds the problem as it requires an increase in oxygen to feed all the muscles we inadvertently tighten. Relaxed muscles use almost no oxygen, so the key is to relax, yes; relax when you start to panic about not being able to breathe! I’m working on it.
I still do pulmonary rehabilitation but have lowered my time on each stage and have to sit the odd exercise out. If I do too much I get tight in the chest and become overwhelmed by the need to rest, but I always seem to think I should be able do more. That’s where the carer’s eye is so brilliant and necessary. Jackie seems to be aware of my needs and limitations before I am; this trip being a case in point.
We were to travel to London to meet APF trustee Wendy Dickinson and her husband John who had kindly arranged a hotel for us so that we could be refreshed for the event. If I have anything to carry, my progress will be slow and I would likely need to sit regularly to stabilise my breathing. Our luggage would, as a minimum would be a flight bag, a suit carrier and at least four bulky oxygen cylinders, each weighing around seven kilo’s; so the wheelchair was required, adding yet more to Jackie’s already considerable challenges.
Thankfully Jackie and Wendy got chatting and a splendid plan was hatched that meant we could meet up half way and share the load. The hotel was good and very close to parliament so we were refreshed and in good time for the event, without being entirely sure quite what form the event might take.
I follow politics closely and to me the public face of our political system is usually split between politicians declaring their intentions in the House of Commons and them then making excuses for falling short via BBC’s Question time. We’d been invited by Stephen McPartland MP an affable chap who is chair of something encouraging called The All Party Parliamentary Group on Respiratory Health. Its official brief is:
“To increase awareness of, and engagement with, respiratory issues in Parliament and ensure that government policies support continued improvement in outcomes for respiratory disease.”
He would certainly be there and perhaps a few other key MPs, policy advisors, researchers and the like who would be offered the first look at a splendid assessment of the current state of the care offered to IPF sufferers around the country.
Action for Pulmonary Fibrosis represent all that’s best in helping to fight our corner on the big stage, and the report we were presenting was indeed ground-breaking as it had uncovered the fact that the NHS has no current coding system to even record how many people were diagnosed. This means that the estimates they had been using to assess the number of patients they were catering for was in fact a guess, based on some elementary arithmetic that could be wildly underestimating the actual figure.
Our venue was a lobbying room, probably fifty foot square where ‘mingling’, rather than being ‘presented to’ seemed to be the preferred arrangement. Our sponsoring MP, Stephen McPartland opened proceedings after which I delivered a brutally harsh assessment of what living with the disease and its prognosis actually feels like.
I had chosen to stay in my wheelchair as standing and talking can affect my voice and I chose to remove that risk. I made eye contact at times throughout the speech with people I’d been told mattered and they were visibly moved.
Never having been a centre of attention while looking so obviously smart, (three piece suit) and obviously disabled before, it’s difficult to gauge whether some of the many kindly, smiling comments were as patronising as a few first appeared. A case in point, before we had made it to the briefing room, Jackie was asked whether she dressed me on a morning.
The mood and spirit in our room was good however and vital connections were made that will subtly raise the profile of IPF in the consciousness of those responsible for formulating health policy.
It was soon time to depart London and it was as we were leaving the hotel that a rather revealing thought hit me: For years I’d played in bands, so a few times a month we’d be lugging gear around and cramming it into cars on our way to and from gigs.
As we were leaving the hotel I’d been put in the back of the vehicle while everyone else scuttled around carrying stuff. It struck me as I sat there with all this activity going on around me how things had changed; I was now more of a cumbersome heavy amplifier, rather than a roadie/lead guitarist. I’m sure there’s a blues song in there somewhere, I’ll let you know after my next meeting with Jack Daniels.
So, considering recent events; Chilcot, Brexit, the Labour Party’s self-destruction and a new Prime Minister emerging over the sorry remains of Michael Gove, it’s a wonder we had anyone turn up at all.
The final analysis will have to wait, but the trustees of APF were delighted at how it went and that’s enough for Jackie and I. We had a concrete statement from Stephen McPartland MP stating that he’d work with APF and promote their activity in his role as chairman of the Parliamentary group.
I was tempted to say that we were privileged to have been given at least a glimpse into the workings of our parliamentary processes, but it isn’t privilege, it’s earned. The concerted actions of a few highly committed people conspires to open doors into the otherwise impenetrable corridors of power.
Without such endeavour our version of democracy simply perpetuates its own self-serving prophesies until someone, somewhere holds it to account. The privilege was being among people who extol the qualities necessary to repeatedly and tirelessly challenge this convention, secure in the knowledge that they know how to bring about change.
More strength to their elbow.