A Lincoln man who has lived with primary progressive multiple sclerosis for 15 years believes “everyone with MS deserves to be on a life-changing drug” like him.
The MS Society says an estimated 65,000 people are missing out on the chance to try the drug, fampridine, in England despite it being available on the NHS in Scotland and Wales.
Andy Ollier was first diagnosed with MS 15 years ago and his symptoms progressed rapidly from there. Multiple Sclerosis damages nerves in your body and can make it harder to do everyday things such as walking, talking, eating and thinking.
He was offered fampridine, which is a symptom management treatment that can help some people with MS significantly improve their walking ability. This was part of a trial at Queen’s Medical Centre in Nottingham.
The 65-year-old has spoken out about the life-changing drug, while the MS Society has urgently called on NHS England, NICE (National Institute for Health and Care Excellence), and the drug manufacturers Biogen to come together and “fix this injustice”.
Andy, who is a retired engineering lecturer, had been unable to walk even short distances without a stick. However, being on the drug for more than 10 years has had a completely transformative effect on his walking, energy levels and hand mobility.
Andy with his two grandchildren.
He said: “Often when you have progressive MS you’re left to your own devices with very little support. Fampridine is the only drug that I’ve been offered – it’s that or nothing.
“It’s fantastic that fampridine is available on the NHS in Scotland and Wales, but it’s baffling that it’s not routinely available in England. It’s such a shame that so many people who could benefit in England aren’t being given access.
“Everyone should have the option to try the drug and see if it works for them. It would really help a lot of people with MS to stay more active, which has huge benefits.”
He added: “I’m much steadier on my feet now, and can walk without concentrating or constantly worrying about tripping up. It has improved everything, not just walking, but the movement in my hands and fingers, and my fatigue.
“I have two new grandchildren, and being on fampridine will help give me the energy to do more things with them.”
Andy spending time with one of his two grandchildren.
Fredi Cavander-Attwood, policy manager at the MS Society, said: “Everyone with MS should have access to life-changing treatments, wherever they live.
“NICE’s initial decision to reject fampridine is deeply disappointing, but this isn’t the end of the road. Decision makers must realise the crucial difference that fampridine could make to the lives of people with MS.
“Together with Andy, we’re urgently calling for NICE, NHS England and the pharmaceutical company, Biogen, to work together to fix this injustice.”
The current NICE guideline for MS does not recommend fampridine for use on the NHS in England. In recently updated draft guidelines, NICE once again rejected fampridine for use on the NHS in England, but Andy and the MS Society want to change that as more than 130,000 people live with the condition in the UK.
NICE has now opened up a consultation on the new draft MS guideline and initial decision on fampridine, which closes on January 31. It will give people the opportunity to tell NICE why fampridine must be available on the NHS in England, ahead of them publishing the final guideline in June.
Andy’s specific situation is rare though as the guideline states that people who have already started treatment with the drug on the NHS should be able to continue until they and their NHS clinician think it appropriate to stop. However, this recommendation is not mandatory.
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Lincolnshire’s biggest rock festival was back with a bang over the weekend – after being delayed four times.
Thousands of rock fans descended on Lincolnshire Showground for Call Of The Wild festival, and were treated to a host of upcoming and well-established acts.
Headliners included Massive Wagons, Reckless Love, and Phil Campbell & The Bastard Sons, established by legendary Motörhead guitarist Phil Campbell after the death of frontman Lemmy.
The four-day rock extravaganza also had many local bands on the billing, including Lincoln-based The Velvet Queens, who announced their new single ‘The Morning After..’ in collaboration with the festival itself.
Many of the attendees had bought early-bird tickets for the festival back in 2019, following the inaugural event three years ago.
Speaking to The Lincolnite Podcast, Dave O’Hara, co-founder of the festival, spoke of his gratitude to the ticket-holders for sticking by them through a difficult couple of years, and admitted the atmosphere at this year’s event had lit a fire within his team going forward.
Listen here:
Call Of The Wild festival started in 2019, and the second show has been pushed back numerous times due to changes in COVID-19 legislation, including one instance where the festival had to postpone just weeks prior to the guidance changing.
Improvements will be made to the cycle network between Pinchbeck and Spalding after the government awarded a payout of £1.8 million to fund Lincolnshire County Council’s Active Travel Plans.
The money allocated to Lincolnshire will be spent on improving facilities along both the Spalding and Pinchbeck roads, subject to feasibility.
The two communities of Pinchbeck and Spalding will be connected with a safe and direct active travel route while also linking up with the important destinations along Wardentree Lane and Enterprise Way.
This route was identified as a priority for active travel development during the council’s work with stakeholders on the Local Cycling and Walking Infrastructure Plan for Spalding.
Councillor Richard Davies, executive member for highways at Lincolnshire County Council, said: “I’m delighted to see further active travel money coming to Lincolnshire. Active travel is something that can benefit all of our communities and I’m pleased to see the development of a route in the south of our county.
“Having been actively developing this idea for one of our Local Cycling and Walking Plans (LCWIPs) it’s clear to see that the benefits are going to be widely felt. This is a great success in one of our bids to the Department for Transport.
“Lincolnshire has invested in developing a LCWIP for each of our strategy board areas. We believe the LCWIPs will be the key for unlocking more of the active travel funding and we look forward to working with the DfT to develop more ideas from our plans for Lincolnshire.”
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