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.