Archive | September, 2018

Chesterfield MP Toby Perkins attends drop in session 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.

This Tuesday, 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.

TOBY PERKINS MP SAID:

“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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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.

TOBY PERKINS MP SAID:

“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: https://www.peakfm.co.uk/news/local/chesterfield-mp-urges-council-to-reconsider-proposed-cuts-to-school-crossing-patrols/

Toby with the Labour campaign team

Toby with the Labour campaign team

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BLOG: Breaking the taboo around suicide is vital to people getting help

September 10th was World Suicide Prevention Day (WSPD) . Not the cheeriest subject to be writing about, but nonetheless it references one of the most crucial issues facing the country and one which we must talk about to break the taboo.

The statistics are becoming as familiar as they are shocking.

  • Men between the ages of 20 and 49 are more likely to die of suicide than any other means.
  • Across Britain Men are three times more likely than women to take their own lives and in Derbyshire, it’s even worse, with 85% of suicides being men.
  • One in every 15 of us has attempted suicide at one time or another.

And yet, despite it being an increasingly common event, we talk about suicide too little.

WSPD aims to break that taboo, and here in Derbyshire I am supporting an innovative partnership between organisations including the NHS, Derbyshire County Council, local charities and support groups to ‘Work Together to Prevent Suicides’.

The suicide prevention work includes stalls that our local professional and semi-professional Football clubs to ensure that supporters are made aware of the support available for people who are considering suicide or self-harm, or even others who are feeling low and wouldn’t normally talk about their feelings.

I am pleased to see that different organisations are working together to raise awareness about suicide prevention. I also met with East Midlands Trains to hear about their work reducing suicides on the railways.  They have prevented 18 people from taking their own lives on the Railways at Chesterfield station alone in the last 20 months, which shows how commonplace this is.

Often a friendly word or enquiry can be the support someone who is feeling very low can need, but we should all take responsibility for looking out for our friends and colleagues.

Alongside what we can do and the work of charities, people will rightly question what our health services are doing. 75% of people who die by suicide are not known to mental health services. But amongst those who are waiting times are dangerously long and the constant persecution of many people suffering with disabilities or mental health by our welfare system  can push people into crisis too often.

In my office we have had to refer people for crisis support on many occasions, but schools, GPs, Job Centres, churches and housing de3partments all need training to look out for the signs that someone may be feeling suicidal and intervene before its too late.

The message that WSPD sends is that anyone who is feeling suicidal should consider:

  • speak to a friend, family member or someone you trust
  • call the Samaritans 24-hour support service on 116 123
  • go to your nearest accident and emergency (A&E) department and tell the staff how you are feeling
  • contact NHS 111
  • make an urgent appointment to see your GP

Whilst this is not the most uplifting subject, it is a crucial one, and the message from WSPD is that if we all look out for each other we can provide that crucial support so that people at their lowest ebb can live to smile again.

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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 www.organdonation.nhs.uk

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Toby expressing fury of Derbyshire residents at price being paid for Lansley's failed reforms

MPs unite to slam CCG Voluntary sector cuts

Chesterfield MP Toby Perkins joined forces with High Peak colleague Ruth George and MPs from across the political spectrum in slamming Derbyshire CCG’s decision to cut all voluntary sector funding in a fiery Parliamentary debate on Tuesday.

 

The debate highlighted that two months ago on the 70th anniversary of the NHS all the voluntary sector organisations in Derbyshire received letter stating that their funding from the CCG’s was to be cut.

 

Toby pointed out that voluntary sector are successful in reducing demand on the eakth sector saying:

“alongside the financial consequences of their cheaper cost, many voluntary organisations, such as Age Concern, which I saw last week, keep old people well and prevent them from having to use health services by providing services such as the befriending service in Chesterfield?”

 

After contributions against the cuts from Tory MPs as well as the Labour ones, Toby rounded on the Government’s 8 years of failure on the health service reminding the Government that the measures they currently suggest as solutions were already in place under Labour and were demolished by the Health reforms of disastrous former  Health Secretary Andrew Lansley, reminding Government Minister Stephen Barclay that: “

I remember that, back in 2010, we had the Derbyshire primary care trust, but then the Lansley reforms came in, broke up the PCT and turned it into five different organisations in North Derbyshire. Can he imagine how galling it is for us to hear that those organisations, which went from a very strong financial position back in 2010, are now in utter financial chaos, so the Government are going to undo the Lansley reforms and to get those economies of scale that we were telling them about back in 2010?

 

Toby had met with Chesterfield based Age Concern just last Friday to learn about the dire consequences for their Telephone befriending service if the CCG went ahead with the 100% cut to their service. He has also highlighted that underfunding of the NHS by the Government is forcing Clinical Commissioning Groups to make some unacceptable and agonising choices about what treatments they can fund or items they can offer on prescription.

Toby expressing fury of Derbyshire residents at price being paid for Lansley’s failed reforms

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Welcome

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
Email: toby.perkins.mp@parliament.uk
Post: 113 Saltergate, Chesterfield, S40 1NF

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I hold regular surgeries for my constituents.
Please call 01246 386286 or email toby.perkins.mp@parliament.uk to make a booking.

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