What does the general election mean for lymphoma patients?

A mantle cell lymphoma (MCL) support forum I belong to recently had a posting from someone in the US. They’d received a bill of around $70,000 for an 11 day stay in hospital. Their visit involved a single round of chemotherapy. Other people with this rare cancer recount their despair of fighting to pay medical bills. Some are unable even to afford an application for bankruptcy protection. Almost inevitably there is a regular litany of struggles with insurance companies, even for vital diagnostics including PET/CT scans. Those of us from the UK boggle at the mental and physical hardships our fellow patients in the US endure. We know, first hand, how valuable a properly funded and staffed NHS is to our survival. Mantle cell lymphoma strikes people at random and is tough to treat.

One of the many negative consequences of the Conservative and Labour desire to take us out of the EU will be the loss of the European Medicines Agency (EMA). The impact on MCL patients shows every sign of being a disaster. New, innovative treatments that are being developed for lymphoma will take longer to be approved for use in the UK post-Brexit. The experience of Canada and Australia (who approve new drugs at a national level) is that they run around 6 months behind the EU on approvals. Canada and Australia have strong economies. They are not facing the imminent catastrophe of losing EU single market membership. I can only wonder what kind of delays will be introduced into the UK approvals system.

Furthermore, the expertise of the EMA is not something that can be replicated overnight and any replacement will introduce yet more delays. A 6 month approval lag may not sound like very much, but the median survival for MCL patients post-diagnosis is just 3-5 years. As current treatments are limited in their effectiveness, every day counts. And obviously it’s not just MCL patients that will be affected, but I write about what I know.

It’s clear to me that the NHS will face continuing crises should either the Conservatives or Labour party form the next government unchecked. A Conservative victory will see further pressure on NHS budgets and an ever-creeping privatisation of the service. An insurance-backed health service that the right-wing extremists in the Conservative party long for would have a devastating impact on patients. A Labour victory won’t stop Brexit and the loss of the EMA.

Like so many issues in the 2017 general election, the first step to ensuring a successful future for the NHS and the patients who rely on it is to ensure continued EU single market membership. Ideally, we need a chance to retain our full EU membership. The Conservatives and Labour are offering neither. I know how I’m voting on 8th June.

Stapleford Park and Miniature Railway: September 1974

In 1974, Stapleford Hall near Melton Mowbray was home to the 2nd Lord Gretton and his family. The park was at its peak as a tourist attraction, with the grounds containing a lion reserve, miniature railway and two scale model cruise liners.

The Derbyshire Caravan Club centre held a rally there that September. I’ve recently digitised a short sequence of cine film that shows the railway and ships in operation during that weekend.

White Heron LocomotiveThe White Heron arriving into the station, delivering its passengers to the model cruise liners.

LighthouseThe lake had a working lighthouse.

Northern StarThe Northern Star setting sail for a cruise of the lake.

Victoria LocomotiveThis would appear to be ‘Victoria’, a model of a LMS Jubilee class locomotive. However, the FSMR website suggests that it didn’t enter service at Stapleford Park until 1975 … and this film was definitely shot in September 1974. Commissioning tests, perhaps?

Automatic barrierThe train-operated automatic level crossing.

Stapleford Park Plaque - September 1974The caravan club plaque recording the event.

The complete cine film sequence.

Today, the hall is a hotel, the lion reserve is long gone and the scale model cruise liners are no more. However, the miniature railway is miraculously intact and is open to the public twice a year. In 2017 these events are scheduled for 10th & 11th June and the long bank holiday weekend at the end of August.

British Celanese Motor Club – Treasure Hunt, March 1965

Here’s a short cine film of the British Celanese Motor Club’s treasure hunt, held on 21st March 1965.

This was one of an annual programme of motoring events that also included paced drives (rallies).

1965 scheduleAs the club was affiliated to the RAC and the events had to be notified to the local police, it all seemed to be taken pretty seriously. There was an intricate scoring system that made allowances for participants being unable to take part in some events due to work commitments.

Scoring system

This treasure hunt started from the Manor Road Service Station on the A5111 ring road in Derby. I think the garage has long since vanished, but looking at the stills it would seem to have been somewhere near where the Argosy is today.

Manor Road Service Station Manor Road A5111We next see the competitors in Kirk Langley turning right onto Flagshaw Lane. Except – the turning doesn’t look anything like that as far as I can work out. Unless I’m in the wrong place, of course … in which case I’m only going to score one point for a non-finish! Langley MillThe scenes get progressively snowier and more ‘interesting’ to drive, with the competitors finally reaching Tansley in the Peak District. Scotland Nurseries is still going strong today.

TansleyThe treasure hunt finishes at the Celanese Sports & Social Club on Borrowash road, having first turned right across the A52 from Derby to get there. That’s not been legally possible (thankfully) for many, many years!

Borrowash RoadA sprint finish into the social club with the completed check sheets to end.

Celanese Sports ClubContestantEndUnfortunately I can’t find a record of the winner of this particular event in my father’s BCMC files, which are in good order up until the end of 1964. I suspect that my recent arrival may have distracted him somewhat.

St. George’s Day Parade, April 1973, Derby

I’ve finally started to digitise some of the 8mm cine film that was shot by my father, brother and me during my childhood. The earliest reels are from 1964, with the latest being from 1979/80. Most of it is obviously just family stuff, but there are some more generally interesting scenes in amongst the holiday memories.

This excerpt is the 1973 St. George’s Day parade in Derby. From what I remember, these were fairly large events that started somewhere near the Council House and finished with a church service. Venues changed yearly – as I’m sure that as well as attending this one at St. Alkmund’s Church on Kedleston Road, a parade I took part in another year finished at the (now former) Queen’s Hall Methodist Mission on London Road.

If you look very closely you’ll see me marching with the 147th Derby, 3rd Ockbrook & Borrowash cub scouts …

The Mysterious Harper Gardens, Derby

Harper Gardens is a small public space sandwiched between the A6 Pride Parkway flyover and Siddals Road. Not much larger than many suburban gardens, it’s somewhere I usually pass without a second thought on my regular walks between the office and the city centre. But today I noticed the lovely flowering cherry tree in the north-eastern corner of the plot and stopped to photograph it.

Harper GardensIt’s a curious location for a public garden. A quick search of the internet reveals that at some point in the 1940s a paint factory burned down on this spot. Quite how the site ended up in the city council’s hands and became a garden seems less clear.

If anyone can fill in the details for me, the comment box awaits below!

The Beast of Bolsover

As the weather was better than expected today, an excursion to Bolsover resulted. The castle, managed by English Heritage, is fascinating. Sir William Cavendish’s riding school, dating from the 1600s, is possibly one of the reasons why Great Britain is so good at the Olympic sport of dressage horse dancing today. The little castle is beautifully preserved, and its wall paintings are unique survivors from the pre civil war era.

The Little Castle, BolsoverI can’t recommend a visit heartily enough, especially as since the last time I went sometime in the 1990s they’ve opened a visitor centre and cafe. The cherry scone was great and the coffee will definitely put hairs on your chest. Which is perhaps just as well. For at the bottom of the Venus fountain lurks a shocking sight. The Beast of Bolsover, no less. Please look away now if you’re of a nervous disposition.

The Beast of BolsoverDon’t say that I didn’t warn you!

Two to three hours is plenty of time to walk around the castle and grounds at a reasonable pace. An excellent video guide is provided as part of the £10.20 (adult) / £6.10 (child) entrance fee. Grown-up and family friendly commentaries are available.

B5023 Duffield to Cowers Lane

While Italy were busy losing at rugby, I decided to take Gnu out for a run around the Derbyshire countryside. The day was overcast, but warm enough for me to manage with just a fleece, scarf and the heating. This was the most enjoyable stretch of the route – three and a half minutes of B road twistyness between Duffield and Cowers Lane.

I didn’t even bother to stop for the bargain bacon …

Off balance

I’m feeling a little off balance at the moment. Last Wednesday I was busy telling the ARIS and webMethods user groups that “numbers don’t speak for themselves”. I was talking about the creating business cases, but I believe the statement to be true more generally. Numbers only make sense if you can relate them to a specific context. Furthermore, the numbers used must report or measure something meaningful, otherwise there’s no point in collecting the data. (You can find my detailed explanations rants on both of theses topic here and here if you’re interested).

Anyway, this was me in action at the event. It looks a little as if I’m conducting an auction and that the chandelier is about to bring it all to a messy end.

ARIS user group meeting 1st March 2017I’d had an active week up to that point, and although I spent Thursday in the office, that day was busy too. Here’s my steps chart for the first part of the week …

Mon-Thu 27/2 - 2/3 steps… 43,611 in all. I should have been feeling great! Nicely (but not stupidly) over the 10,000 steps a day average we’re supposed to achieve, according to the NHS and others. But having wittered on about context, you should already know that I’m about to tell you what happened next.

Full week 27/2 - 5/3An average of under 1,700 steps a day for Friday to Sunday. Monday to Thursday wiped me out, so I’ve spent most of the time asleep or moping around on the sofa. I haven’t been eating (much) either.

I feel that given my opening salvo I should now provide some context to these numbers. After all, you could just assume that I’ve been really lazy for the last three days. I wish that was true!

My best case hypothesis is that I picked up a bug (or mild food poisoning) early last week. As I was rather ‘poorly’ on Thursday evening that explanation could make sense. My worst case hypothesis is that the lymphoma has started to put on a bit of a sprint. I’ve been feeling increasingly fatigued for some weeks now, with even the most sanguine of the consultants that I’ve been seeing starting to suggest that chemo might be needed ‘soon’. Having spent 2.5 years on watch and wait, I’m not sure if ‘soon’ means weeks or months or a year or more … sometimes I don’t want to know the numbers at all.

Anyway, the next few days should help me figure out which of the hypotheses is right. I’m starting to get a bit of energy back today, so I’m hopeful that the bug explanation proves to be the right context for last week’s steps chart.

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