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SMA Parliamentary Drop-In

Toby Perkins MP attends Parliamentary drop-in on Spinal Muscular Atrophy

A genetic condition which can kill children before the age of 2, and which has recently had funding cut for its only known drug was the subject of a recent Parliamentary reception attended by Chesterfield MP Toby Perkins

Spinal Muscular Atrophy is a very serious genetic medical condition, which usually has an onset in childhood or at birth, progressively results in the deterioration of a person’s muscles and movement in general. It causes severe disabilities, and drastically reduces life expectancy. A child with Type 1 SMA would be unlikely to live past the age of two.

Recently, to the anger of SMA patients, the NHS was advised not to offer the only drug to treat this condition because of cost, despite the drug being potentially life-saving.

Last week, the charity Spinal Muscular Atrophy Support UK held a drop in session in Westminster for MPs wishing to learn more about the illness, and what can be done to help those suffering.

There are 4 different types of SMA, each differing in severity, onset and long-term prognosis, amongst other things. Nonetheless, all the types of SMA affect each patient and their families considerably.

It is estimated that between 660 and 1320 people in the UK are living with SMA, meaning that the cohort of people who would receive the drug is a relatively small one.

Whilst the drug is not a cure for the condition, it is known to extend the life expectancy of sufferers and it is too early to say whether it might offer SMA patients the chance to live into adulthood.

There is evidence that the drug helps improve a patient’s prognosis, which is why NICE and NHS England should take urgent action to review their judgement that the drug is not cost effective.

Toby was recently approached by the parents of a child in his constituency to help after their child was diagnosed with Type 1 SMA.

Luke Catt, contacted Toby recently to ask for his support to get NHS England to offer the drug Nuisinersen to its patients. The drug is currently offered by NHS Scotland, but is much more difficult to obtain in England. NICE provided first guidance that NHS England should not offer this drug, as they say the cost is too high to be considered cost-effective.

Fortunately, Mr Catt’s daughter Grace, is one of the last children to receive the drug before the NICE guidance comes into effect in November, which offers her hope of a longer life.

But any children in England who are diagnosed after November will be denied the drug.

Doug Henderson, an SMA Support UK worker, discussed in detail with Toby what he could do as an MP to support those affected.


“There is nothing more devastating than the news that your child has a life threatening condition. To then discover that the NHS is refusing you a drug that would be available if you lived in most of the countries in Europe is doubly heart breaking. I will be putting pressure on the Health Secretary and NICE to re-consider their decision, so that other children like Gemma might have the chance to live a longer life with SMA.”


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Toby with the Labour campaign team

Labour activists force Derbyshire County Council into U-turn on plans to axe school crossing guards

The Conservative leadership at Derbyshire County Council has cancelled plans to remove funding for school crossing guards in Derbyshire following a strong campaign by Labour activists, councillors and Chesterfield MP, Toby Perkins.

The Council announced plans in June to remove funding for the 108 school crossing guards in Derbyshire which would have placed the onus on schools to pay an average of £4,000k a year and would have led to job losses.

Toby said, “I am very pleased that the Conservatives at County Hall have been forced into a U-turn on this. Schools are under huge financial pressure, which is being exacerbated by changes to the funding formula by Central Government. 34 out of the 38 schools in my constituency are expected to have real terms funding cut and there is no way they could have taken on the burden of paying for school crossing patrols. This would have led to job losses and children placed in potential danger.”

A petition against the cuts was set up by Labour councillors and activitists, securing support from hundreds of concerned parents across Derbyshire. At a full council meeting on 12th September, it was announced that the proposals had been scrapped and the funding for school crossing patrols would be found from “existing council reserves”.

Toby added, “Labour are the last line of defence against Tory austerity both nationally and locally. I am proud that this campaign has stopped another dangerous cut to public services.”

Toby speaking against these cuts on Peak FM in June:

Toby with the Labour campaign team

Toby with the Labour campaign team

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Organ Donation

Toby Perkins MP asks people to tell their families they want to donate today

During Organ Donation Week local MP, Toby Perkins has pledged to help save lives by encouraging all those they represent to talk to their families about organ donation this week and sign the NHS Organ Donor Register.

Toby Perkins is taking action as nationally three people die every day in need of an organ. He is calling on each and every person in Chesterfield to talk to their family about organ donation and make it clear if they want to save lives.

Families will always be approached about donation if a loved one can donate their organs. Knowing what you wanted can help your family support their decision at a difficult time.

NHS Blood and Transplant and Kidney Care UK have praised the MP for making this pledge during Organ Donation Week.

More and more families in Chesterfield are saying yes to organ donation but there is still an urgent shortage of donors around the country.

After attending an event in Parliament on Wednesday to mark the event Toby Perkins stated: “I have been hearing from someone desperately waiting for organ donation and from those wanting to get the legislation through. I strongly support this campaign and know it is vitally important for every person waiting for a transplant and of course for their families and friends. We need more people in Chesterfield to talk about organ donation to increase the number of lifesaving transplants. Only one third of adults in England have told their partner or their family they want to donate, despite 8 out of 10 people telling us they would be willing to donate or would consider it. Sadly, many opportunities are lost every year because families don’t know if their loved one wanted to be a donor or not.”

Also attending the event Anthony Clarkson, Interim Director of Organ Donation and Transplantation for NHS Blood and Transplant said: “We are very grateful to Toby Perkins for his support during Organ Donation Week. Words save lives. Please, tell your family you want to save lives through organ donation, because it could be the difference between life and death for someone else.”

Fiona Loud, Policy Director at Kidney Care UK, said: “Last year more than 400 people died whilst waiting for a transplant so it’s vital that we find ways to help save lives. With around 6,000 people waiting for that life changing call, and 80% of these hoping for a kidney transplant, we are urging people to have a chat with their families and make sure they know how you feel about organ donation.”


Millions of people are already on the NHS Organ Donor Register, join them today and tell your family you want to save lives. Register at

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Toby’s Taste of Life on the Beat










Shoplifting, a break in and a missing person were just some of the incidents on the agenda for Toby Perkins MP as he joined Chesterfield Police for a day on the beat.

Toby said “It’s eye-opening to see what the officers go through day-to-day. It reinforces the admiration you already have for the police, seeing them throwing themselves into harm’s way for the safety of the community. Myself and other MPs debate issues on crime and police in Parliament frequently so it’s important I have a strong sense of what the town’s officers are dealing with.”

Chief Superintendent Rachel Osborne, of Derbyshire Police said “It was good to meet with Mr Perkins and talk to him about policing issues and challenges for Chesterfield and the work we are doing to tackle crime. As well as meeting with senior officers, he had the opportunity to spend time with frontline officers on patrol and to experience first-hand the variety of issues and work that they do on a day to day basis.”

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Toby Perkins MP Statement

Chesterfirld MP, Toby Perkins reacts to Chesterfield Royal Hospital’s announcement that they will create a wholly owned subsidiary company

I am extremely disappointed that they have decided to push ahead with the creation of a wholly owned subsidiary despite the protestations of thousands of local people including hundreds of staff at Chesterfield Royal. Moving over 800 staff who have dedicated their careers to the National Health Service, with great pride and dedication, will create a divisive two-tier workforce. The suggestion that non-medical staff are somehow less a part of our NHS than those who deliver medical services should have been rejected. The process of seeking a tax advantage is an unnecessary distraction at a time when there is such pressure on finances anyway. I have previously met with staff, unions and directors at the hospital and I will continue in that dialogue with them and the Government, to ensure that any changes don’t lead to a poorer service or a two tier workforce.

Below is Toby’s statement from the demonstration today;

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Leonard Cheshire2

MP urges employers in Derbyshire to recognise the potential of disabled people

A new campaign launched by the charity Leonard Cheshire is calling for better support for disabled people on their journey to employment and whilst in work. Chesterfield MP, Toby Perkins, has joined the campaign and is urging employers in Derbyshire to recognise the potential of disabled people when recruiting new staff.

Toby said: ‘There has been significant progress in improving access to the workplace for disabled people but there is still a lot of work to do to level the playing field and break down barriers caused by stigma, prejudice and a lack of understanding about the capabilities of disabled people, and the support that is available.’

A Government fund, ‘Access to Work’, exists to support businesses with adaptations to help disabled people in the workplace. The fund can help with everything from mobility ramps or lifts to sign language translators.

Recent research conducted by Leonard Cheshire revealed that one in five employers said they would be less likely to employ a disabled person. Of those employers who are less likely to employ a disabled person, almost three in four said they would be concerned they would struggle to do the job.

Toby added, ‘I am delighted to support Leonard Cheshire’s Untapped Talent campaign, and would encourage employers to investigate the Access to Work would help them. I urge employers in Chesterfield to recognise the skills and knowledge that disabled people have and that make them an asset to our workplaces.’

Toby at the launch of Leonard Cheshire's Untapped Talent campaign

Toby at the launch of Leonard Cheshire’s Untapped Talent campaign

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Chesterfield MP, Toby Perkins celebrates the National Citizen Service with a visit to Chesterfield College

The National Citizen Service (NCS) is open to all 16 and 17 year olds in England and aims to bring together young people from different backgrounds and helps to develop confidence, self-awareness and responsibility and encourages personal and social development by working on skills such as leadership, teamwork and communication.

Part of the NCS programme is to develop a social action project to deal with a local issue and this was the stage that the groups that Toby meat were at.

At Chesterfield College, Toby met a number of groups including Bring the Difference, who are working to raise awareness and funds for the charity Newlife, 5esnsory Gardens, who are looking to build a sensory garden at Brockwell Junior School, Active Generation, who are raising funds to be able to take activities and ‘care packages’ at Springbank Care Home and Styling Stigma, who aim to raise awareness about young people who need to wear wigs through alopecia or cancer treatment and to reduce the stigma of wearing a wig by showing different ways and methods that they can be styled.

Toby said: “It is great to see these young people being active in their local communities and identifying ways that that they can make a difference. I can’t wait to see how these projects progress and the difference they make to the people involved.”

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Basketball club Pic 2

Chesterfield MP leaps to the defence of local basketball club in sports hall hire charges dispute

A fast growing and successful local Basketball club has enlisted the help of the local MP following a charging increase that led them to fear for their future.

The Chesterfield Flight Basketball Club, which trains children from across Chesterfield and plays in the national basketball league, is facing uncertainty due to an increase in charges to hire the sports hall at Outwood Academy Newbold. Chesterfield MP, Toby Perkins, joined members for a training session to find out about the Club and the important role it plays in the community.

Toby said, “Basketball is one of the fastest growing sports in the UK and Chesterfield Flight is doing a fantastic job of bringing people into the sport. The children I met with are socialising, staying active and developing skills that will help them in every aspect of their lives. Andrea Mooney and the people running the club are putting their own time and money in to make it accessible for as many people as possible but the increase in charges for hiring the sports hall is potentially putting the club at risk. I have written to ‘School Lettings Solutions’ and Outwood Academy Newbold urging them to reconsider the increase in charges.”

School Lettings Solutions manage facilities hire for many schools and academies in Derbyshire. They have increased the charges from last year by 20% without any explanation as to why these additional costs are justified.

Andrea Mooney, Chesterfield Flight Basketball Club manager, said “”Grass root sport should be accessible and affordable for every family. Significant costing from facility hire filters down to clubs and their members. Clubs require facilities to provide opportunities for children. If these were made more affordable, it would mean reasonable costs for training and as a result there would be an increase in children participating in sport as it becomes more accessible for the wider community.”

Chesterfield Flight Basketball Club was formed in early 2016 and is a development focused club that places its members before all else. They offer a range of coaching sessions for U12, U14 and U16s and play in Central Venue League, National Basketball League, and National Club Competitions.

Toby with members and volunteers at the Chesterfield Flight Basketball Club

Toby with members and volunteers at the Chesterfield Flight Basketball Club

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I am Toby Perkins, Labour's Member of Parliament for Chesterfield. If you would like to get in touch with me, my office is open and can be reached by phone on 01246 386 286. I also hold regular surgeries so that constituents can meet me and I can take up their concerns. If you would like to make an appointment then please do contact my office. Thank you for visiting.

Contact Toby

Tel: 01246 386286
Post: 113 Saltergate, Chesterfield, S40 1NF


I hold regular surgeries for my constituents.
Please call 01246 386286 or email to make a booking.

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