Tag Archives: treatment


Private cancer therapy ‘crowdfunding rise’

There has been a big leap in the number of cancer patients turning to crowdfunding to pay for treatments not available on the NHS, figures seen by BBC Radio 5 live suggest.

Data from JustGiving shows that 2,348 appeals were set up by cancer patients or their loved ones in 2016, a seven-fold rise on the number for 2015.

Over £4.5m was raised by these appeals in 2016 compared with £530,000 in 2015.

Doctors say the number of patients bypassing the NHS is “very worrying”.

‘Strength and generosity’

Liz Sheppard, a mother-of-three from Mansfield, was diagnosed with small cell stomach cancer – a rare form of the disease – in November 2015.

She has now raised over £135,000 online to help pay for immunotherapy, which she is receiving at a private centre in London.

She has already spent around £60,000 of the money on immunotherapy, and says she is responding well to the treatment.

She told the BBC: “I’m able to get out and lead as normal a life as possible. Certainly I’m not bedridden.

“If it wasn’t for people’s generosity and kindness, I wouldn’t be where I am now. It’s not something I could have self-funded. Without that money I wouldn’t be here. It means everything.

“I’m a mother. I look at my children every day and they keep me going.

“And the messages people leave when they make a donation can be motivating in themselves. You can draw a lot of strength from them.”

A spokesman for NHS England said: “More people than ever before are surviving cancer thanks to improved NHS care… and together with NICE (the National Institute for Health and Care Excellence) we have also launched a new-look cancer drugs fund, meaning patients will be able to access promising, new and innovative treatments much quicker.”

According to the detailed figures released by the platform JustGiving, USA, Germany and Mexico topped the most popular destinations for patients travelling abroad for treatments last year.

More than a fifth of those looking for treatment (404 people) raised £1,393,490 in donations to travel to the United States for care.

Germany followed in second place with 142 people crowdfunding £368,530 (a 461% increase from 2015), whilst 23 people raised £69,660 to travel to Mexico for treatment (a 224% increase from 2015).

Immunotherapy was the most popular treatment crowdfunded on the JustGiving platform in 2016.

The therapy uses the body’s own immune system to fight off cancer. It has been shown to work in certain cases, but not all. And some are still in the very early stages of research.

The treatments people have funded are not always considered to have the backing of sufficient scientific evidence by NHS experts.

Charles Wells, chief operations officer for JustGiving, said: “Over the last 12 months, we’ve seen more and more people crowdfunding on JustGiving to raise money for cancer treatments that aren’t available on the NHS.

“It can be a practical way for friends, family and the community to come together and help, as well as providing a lifeline for people by giving them access to pioneering treatments when they’ve been given a cancer diagnosis.”

‘Funding pressures’

Consultant oncologist Dr Clive Peedell expressed concern about the rise in the number of patients bypassing the NHS to fund their own treatment.

He told BBC Radio 5 live: “The NHS is clearly financially under pressure at present, but cancer therapy has received preferential funding compared with other diseases and conditions.

“The system for approving effective new cancer drugs is not perfect, but is much improved.

“The vast majority of proven effective treatments for cancer are funded by the NHS.

“This includes immunotherapy for a number of indications including lung cancer, which is my own field.

“However, funding pressures are likely to pressurise the current system even further and we could see it break down in future.

“It is therefore very worrying to see this trend of crowdfunding for cancer drugs.

“It would be interesting to review all the cases to find out how many are genuinely appropriate.

“I worry that some patients may be trying to access treatment that may not be beneficial.

“Worse still, there may be significant extra costs involved, especially if patients pay privately or travel abroad.”

The NHS England spokesman said it was investing £130m in state-of-the-art radiotherapy equipment, alongside £200m of funding over two years to improve local cancer services.

Source BBC News


Cancer ‘vaccine’ that remembers disease and fights it years later is developed by scientists

Researchers engineer immune cells so they boost body’s natural defences to fight tumours and stand guard for lifetime – acting effectively like vaccine

Scientists say it is like having a “living drug”, which is constantly vigilant to the return of cancer and quickly removes it from the body.

A new study, presented at the American Association for the Advancement of Science annual meeting in Washington, has proven for the first time that engineered “memory T-cells” can persist in the body for at least 14 years.

Professor Chiara Bonini, a haematologist at San Raffaele Scientific Institute and Vita e Salute San Raffaele University in Milan, said: “T-cells are a living drug, and in particular they have the potential to persist in our body for our whole lives.

“Imagine when you are given a vaccine as a kid and you are protected against flu or whatever for all of your life. Why is that? It’s because when a T-cell encounters the antigen and gets activated, it kills the pathogen but also persists as a memory cell.

“Imagine translating this to cancer immunotherapy, to have memory T-cells that remember the cancer and are ready for when it comes back.”

In a trial at a Milan hospital, ten patients who had bone marrow transplants were also given immune-boosting therapy which included the memory T-cells. They were found to be there 14 years later.

Immunotherapies, which harness the body’s own immune system, look set to replace cell-damaging chemotherapies. But one of the biggest challenges is to make these changes last long enough that the cancer cannot come back.

The Milan study proved for the first time scientists have shown that these cells can survive in the body well beyond the original cancer treatment.

Prof Bonini and colleagues are now working on a new wave of immune cells that can use sensor molecules known as antigen receptors to track down and wipe out a wide variety of types of cancer. When the cells are combined with the memory cells it should produce a treatment which effectively vaccinates the body against cancer.

“When a T-cell encounters the antigen and gets activated, it kills the pathogen but also persists as a memory cell,” she said. “Some of these memory T-cells will persist through the entire life of the organism, and so if you encounter the same pathogen – say if the same strain of flu comes back ten years later – then you have memory T cells that remember it from ten years earlier and kill it quickly so you don’t even know you’re infected.”

Daniel Davis, professor of immunology at the University of Manchester, said it was an “important advance” in cancer treatment.

“The implication is that infusing genetically modified versions of these particular T-cells, the stem memory T-cells, could provide a long-lasting immune response against a person’s cancer,” he said.

“Immunotherapy has great potential to revolutionise cancer treatments and this study shows which type of T-cells might be especially useful to manipulate for long-lasting protection.

“This research area is hot – no question about that. Our detailed knowledge of T-cells is paying off here with important new ideas for tackling cancer.”

In a separate presentation at the AAAS, a team of US scientists showed that their T-cell immunotherapy treatment for leaukaemia had an “unprecedented” success rate of 94 per cent in patients who had been given only months to live.

US scientists said they had achieved “extraordinary” results in early clinical trials.

Stanley Riddell, of the Fred Hutchinson Cancer Research Centre in Seattle, said balancing the different types of immune cells and then equipping them with cancer-sensing molecules had saved the lives of leukaemia patients for whom all other treatments had failed.

His team treated 26 patients whose acute lymphoblastic leukaemia was so advanced they had only two to five months to live. After 18 months, 24 of the patients were in complete remission.

“These are in patients that have failed everything,” Professor Riddell said. “This is extraordinary. This is unprecedented in medicine to be honest, to get response rates in this range from very advanced patients.”

Source The Telegraph

Cancer sufferer’s only break in treatment ‘not a good reason’ for term-time holiday

A mother has criticised her son’s school for refusing to authorise a term-time holiday – despite it being the only time she could take a break from her cancer treatment.

Louise Hamilton, 40, was diagnosed with breast cancer on March 4 and underwent an intensive course of chemotherapy and radiotherapy.

Her only break in her six-month treatment came the week starting September 7 and her family wanted to take a well-deserved holiday. However, her eldest son’s school said it was not an “exceptional circumstance”.

Mrs Hamilton – who has children Brooke, three; Jacob, five; and 14-year-old James – said: “My children and my husband, Andy, have been a constant rock to me. They inspired me to fight and never be defined by cancer.

“We all craved a family holiday so we took the chance to book a short break as a great way to chill after my gruelling regime. My youngest son’s school, Richmond Hill Primary Academy, authorised this holiday without a moment’s hesitation.

“I am absolutely livid. It makes me feel that I have to be on my death bed to get a holiday authorised”
– Louise Hamilton

“My eldest son’s school however, Ridgewood Academy, said the holiday will not be authorised as it is not classed as an exceptional circumstance.

“I have gone through an operation, 15 weeks of chemotherapy and scans, but this is not ‘exceptional’ enough. I am absolutely livid. It makes me feel that I have to be on my death bed to get a holiday authorised.”

Mrs Hamilton, from Doncaster, South Yorkshire, who is married to 44-year-old Andy, said her treatment has proved to be successful and her cancer has gone into remission.

Ridgewood School has told her the holiday will be marked as unauthorised, but it is unlikely she will be fined.

A Doncaster Council spokesman said they have not been contacted by the school to take action against the Hamiltons.

Neither Ridgewood Academy or Richmond Hill Primary Academy were available for comment.

Last week, a father who took his daughter to Disney World in term-time overturned a court fine imposed on him in a victory for parents that could see more fines challenged.

A Department for Education spokesman said the Disney World case does not set a precedent because it was made in a magistrates’ court and is not binding in any other court.

She added: “It is a myth that missing school even for a short time is harmless to a child’s education. Our evidence shows missing the equivalent of just one week a year from school can mean a child is significantly less likely to achieve good GCSE grades, having a lasting effect on their life chances.

“Heads and teachers are now firmly back in charge of their classrooms, and most recent figures show we have made real progress – with 200,000 fewer pupils regularly missing school compared with five years ago.”

Source The Telegraph

Alzheimer’s breakthrough: Scientists may have found potential cause of the disease in the behaviour of immune cells – giving new hope to millions

Scientists have broken new ground in the search for an Alzheimer’s cure, discovering a new potential cause of the disease, which it may be possible to target with drug treatments.

Experts said the findings, from Duke University in North Carolina, USA, could “open new doors” in the increasingly frustrated global hunt for a dementia therapy.

Researchers at Duke announced that their studies of Alzheimer’s in mice had thrown up a new process they believe contributes to the disease’s development.

They observed that in Alzheimer’s, immune cells that normally protect the brain instead begin to consume a vital nutrient called arginine.

By blocking this process with a drug, they were able to prevent the formation of ‘plaques’ in the brain that are characteristic of Alzheimer’s disease, and also halted memory loss in the mice.

While no technique that is tested in an animal can be guaranteed to work the same way in humans, the findings are particularly encouraging because, until now, the exact role of the immune system and arginine in Alzheimer’s was completely unknown.

The drug that was used to block the body’s immune response to arginine – known as difluoromethylornithine (DFMO) – is already being investigated in drug trials for certain types of cancer and may be suitable for testing as a potential Alzheimer’s therapy.

The discovery was welcomed by experts in the UK who said it had filled in gaps in our understanding of Alzheimer’s and could “open new doors” to future treatments for the devastating condition, which affects more than 500,000 people in the UK alone.

A new drug target for Alzheimer’s would be hugely welcome a field where funding and industry’s will to invest has been waning, in spite of the growing human and economic cost of Alzheimer’s and other forms of dementia.

The number of people worldwide living with some form of dementia is set to reach 135 million by 2050. However, after a string of costly failures to bring effective drugs to market, pharmaceutical companies are increasingly cutting funding for research.

The G8 group of nations pledged in 2013 to find a major new dementia treatment or cure by 2025, and the Coalition government committed the UK to doubling its contribution toward this goal to £132m by that date.

Carol Colton, professor of neurology at the Duke University, and senior author of the new study, said that Alzheimer’s research had been dominated by an attempt to understand the role of amyloid – the protein that builds up in the brain to form plaques – but that a focus on arginine and the immune system could yield new discoveries.

“We see this study opening the doors to thinking about Alzheimer’s in a completely different way, to break the stalemate of ideas in Alzheimer’s disease,” she said.

“The field has been driven by amyloid for the past 15, 20 years and we have to look at other things because we still do not understand the mechanism of disease or how to develop effective therapeutics,” she added.

Arginine is an amino acid and an essential nutrient for several bodily processes, including cell division, healing and immune responses.

It is found in food, including dairy products, meat, nuts and chickpeas, but the team at Duke said that their study did not suggest eating more arginine would have an impact on Alzheimer’s risk. The blood-brain barrier regulates how much arginine can enter the brain, and the immune response that breaks down arginine would remain the same even if confronted with higher levels of the nutrient.

Their study, which is published in the Journal of Neuroscience, was led by Matthew Kan, an MD/PhD student in Professor Colton’s lab.

Dr Laura Phipps, from Alzheimer’s Research UK, said that because the research had only been carried out in mice it would be important for tests in humans to confirm the findings.

“Clinical trials are essential before any potential new treatment can be given to people, but these early findings could open new doors for future treatment development for Alzheimer’s,” she said.

“The study suggests that low levels of arginine in the brain could contribute to the death of nerve cells in Alzheimer’s, but there is much more we still need to understand about how and why nerve cells die in the disease,” she added.

Dr James Pickett, head of research at the Alzheimer’s Society said the new study “joins some of the dots in our incomplete understanding of the processes that cause Alzheimer’s disease”.

“Importantly, these new findings reflect earlier observations that arginine is reduced in the brains of people with Alzheimer’s disease,” he said. “The next step would be to show that targeting arginine metabolism in the brain can reduce the death of brain cells, as this was not shown in the current study.”

Alzheimer’s is the most common form of dementia and affects around 500,000 people in the UK. The number of people living with dementia in the country is set to rise to above one million within 10 years, with huge costs to families, the NHS and social care services.

Source The Independent

Why dementia gets worse when the sun goes down – and what anxious carers can do to make things better

Looking after someone with dementia can stretch people to their limits, and there are many in this situation. In England alone, there are more than 670,000 unpaid carers helping someone with dementia.

Here, in the final week of our major Good Health series on dementia, we turn our attention to the carers and what can be done to make life easier for them and their loved ones…


The early stages of the disease bring changes that may be so subtle that some friends and acquaintances are unaware that there is anything wrong – and this stage can continue for many years.

But as the disease progresses and more damage is done to the brain, symptoms become more pronounced: difficulties with communication become more intense and issues such as getting dressed or managing day-to-day affairs become more problematic.

This marks the beginning of the middle stage, the longest stage, which can last for several years. It’s when the condition becomes more challenging and extra help may be needed.

However, there will be good days as well as bad. The following can help . . .


In the early stages of dementia, it’s the short-term memory that’s most affected, making it harder for patients to keep track of the day, or even what time of day it is.

I’ve found that sticking to a routine helps keep someone with dementia better orientated, and gets their body clock into a rhythm.

In the early stages, aim to establish fixed times of day for the following – it may help to write this on a board that’s kept next to a calendar (cross it off to show what day it is) and a clock, so that they know what to expect when.

  • Bed and getting-up times.
  • When to take medication.
  • Meal times.
  • Shopping days.
  • Leisure time such as TV, radio or social times.

In the middle stages of dementia, routines may still be useful but patients can be more prone to mood changes, so be flexible. Encourage but don’t coerce.


The middle stage of dementia inevitably heralds changes in behaviour. This can be one of the toughest things to cope with, for at times it may seem as if the person you know and love has gone. The following are common:


This can be very draining as some people with dementia do not like to let their carer out of their sight. Clinginess is the return of a psychological reflex from our toddler years – a toddler will cry when their mother moves away or when a stranger approaches.

As the dementia progresses, the loss of nerve cells in the brain allows old reflexes that were replaced in adulthood by more complex brain pathways to resurface.

What to do: The best way to deal with it is by diluting contact – try introducing other regular carers as soon as the person being cared for starts to display any clingy behaviour. The clinging behaviour may now apply to many people, not just one.


Around 60 per cent of those with dementia wander – pacing around the house or outside of the home – and the problem is they can get lost, as the damage to the hippocampus part of the brain means they lose their sense of orientation.

What to do: If they tell you they’re going out don’t argue but speak calmly and tell them they don’t need to as they are ‘staying here’ tonight.

Avoid busy places such as shopping centres. People with dementia may find these disorientating and when they get home this disorientation can continue and induce wandering so they may feel the urge to leave the house.

Wandering about the house at night can arise from a need to go to the loo. Ensure they don’t have too much fluid before bed and install night-lights to help prevent falls. Painting the walls and doors a matching colour makes it less likely that the person with dementia will find their way out.

You could also consider moving the lock higher up the door to a less familiar place.

You may want to consider installing movement sensors to alert you to potential problems.
Two-thirds of those with Alzheimer’s experience ‘sundowning’, which possibly happens due to a disruption to brain chemicals affecting the body clock


Worrying for no reason or displaying physical symptoms such as palpitations are signs that the dementia patient may be suffering with anxiety.

What to do: Try to identify what’s causing it – have there been more people round than normal, or have they had too much caffeine? Many of the triggers may be unavoidable, but it can help to keep their surroundings as comfortable and relaxing as possible.

Put pictures and familiar possessions around them. Pleasant smells such as flowers, baking aromas and soap may trigger memories that help distract them from their anxious feelings.

Playing music can also be calming. Talking to them can distract them, too. But never talk down to them or use childish language as this could make them angry.

Anger and aggression

It can be confusing when someone who was once so patient and tolerant becomes prone to temper tantrums.

What to do: It’s important to consider any physical reasons that might be making them this way.

Pain is a common cause of anger in those with dementia, as are urinary or chest infections, a stroke, or even something as simple as not having had enough sleep.

If you suspect any of these is possible, then speak to a doctor.

Speak to the person with dementia reassuringly, in a calm manner. Use music or a calming activity such as massaging or stroking their hand or brushing their hair to distract them.

If, however, they seem aggressive do not put yourself in danger. If necessary, move back and wait for them to calm down.


Often people with dementia have good and bad days but also good and bad times during a given day – and often they may display more symptoms and anxiety as the light starts to fade, becoming confused, agitated, restless or showing repetitive behaviours.

This pattern is referred to as ‘sundowning’.

It’s not clear why this happens – it’s possible it’s to do with a disruption to brain chemicals affecting the body clock.

Two-thirds of those with Alzheimer’s disease experience sundowning.

It can occur at any stage of the condition, but tends to peak at the middle stage and lessen as the disease progresses.

What to do: Keep the person busy at sundown and in the early evening. Avoid stimulants such as coffee or alcohol at this time of day as this may make them more excitable. A rocking chair can help as it is soothing and relaxing. It may also help to introduce more light into the room.


With dementia, the parts of the brain that normally deal with understanding, thought processing and language deteriorate.

The patient may struggle with nuances and may lose their sense of humour; they may also get frustrated and cross when they can’t quickly bring to mind the words they need.

Furthermore, they may seem to get stuck in a loop and repeat the same question again and again.

The following strategies can help tackle these issues:

  • Before you start talking always engage eye contact to help get the person with dementia to focus on you. There can be a tendency for them to look away and this makes it harder for them to concentrate on the conversation.
  • Be careful about asking questions they may be unable to process. For example, if they’re upset don’t ask what’s wrong as they may not know, or are unable to put it into words. Instead, tell them: ‘You seem to be upset; let’s think how we can make you feel better.’
  • Finishing sentences for them can increase frustration. It’s better to ask if they’d like you to find words for them if they’re having difficulty.
  • Watch their body language as this can give you clues about how they are feeling. For example, repetitive movements can mean they are anxious or scared, while withdrawing may mean they feel overwhelmed.
  • If they’re doing something obviously wrong, for example putting dishes in the washing machine or clothes in a food cupboard, don’t ask them why or castigate them – the reasoning side of their brain has been affected and pointing out their mistakes will only cause them embarrassment and frustration.

Better to say: ‘You seem to have put the crockery in the washing machine. Did you mean to put them in the dishwasher?’

■ Dr Souter is a retired GP and fellow of the Royal College of General Practitioners. Adapted by LUCY ELKINS from Your Guide To Understanding And Dealing With Dementia by Dr Keith Souter, published by Summersdale, £8.99. Order at www.mailbookshop.co.uk, or call 0808 272 0808, p&p is free for a limited time only.

Source Mail Online

Dementia research disgrace: Just 8p of every £10 spent on the disease goes towards finding cure

Just 8p in every £10 spent looking after dementia patients goes on research into the causes, shocking figures reveal.

The outlay on stroke research is little better, with 19p allocated from each £10 spent on the health and social needs of patients.

A study says the amount spent by the Government and charities studying dementia and strokes is ‘still way too low’.

Despite extra cash pumped into the two diseases recently by government bodies, they remain underfunded given the economic and personal impact felt by millions of sufferers and their families, say researchers.

In comparison to cancer and coronary heart disease they are still poor relations, according to calculations by Oxford University academics.

The amount spent on cancer research is around 13 times higher than dementia, and almost six times more than stroke.

The spend on heart disease is eight times that of dementia and triple the amount spent on stroke research, says the study published in the online journal BMJ Open.

Researchers assessed central government and charity research expenditure in 2012 into the UK’s leading causes of death and disability – cancer, coronary heart disease, dementia and stroke which together accounted for over half of all deaths.

The combined amount of research funding allocated by the Government and charities to the four conditions came to £856million in 2012, almost two-thirds of which was allocated to cancer.

Around one-fifth was devoted to coronary heart disease, while just 11 per cent was allocated to dementia and 7 per cent to stroke research.

The study found a significant shift in funding since 2008, particularly after a commitment by the Coalition to new money for dementia research.

But the sums allocated by charities have scarcely budged since 2008, possibly because they rely on public donations which may be affected by ‘a form of ageism’ where dementia and stroke are seen as inevitable only in the elderly.

Research leader Professor Alastair Gray, of the Health Economic Research Centre at the Nuffield Department of Population Health, Oxford University, said overall research funding has not been cut but priorities had shifted.

Almost two-thirds of research funding allocated by to the four conditions was allocated to cancer

Overall research spending by government bodies went up 20 per cent over the period, but there was a change in diseases that benefited. In 2012, £157million was spent on cancer research by government bodies, down from £267million in 2008. Prof Gray said: ‘There was increasing recognition that expenditure on dementia should rise and this was reflected in the Coalition agreement.

‘As a consequence less was spent on cancer because of the increasing emphasis on dementia and stroke, but these areas remain underfunded when compared with the burden of disease.’

He said research funding was ‘still way too low’ in both diseases, especially for stroke. There are at least 800,000 dementia patients and 1.2million stroke victims needing health and social care each year in the UK, compared with 2.3million cases of cancer and the same number of heart disease cases.

Costs of healthcare were highest for cancer at £4.4billion and lowest for dementia at £1.4billion and stroke at £1.8billion. But social care costs of dementia outweighed social care costs of the other three conditions combined.

Health and social care for dementia cost £11.6billion in 2012 – more than double the equivalent bill for cancer. This means that for every £10 of health and social care costs attributable to each condition, £1.08 in research funding was spent on cancer, 65p on coronary heart disease, 19p on stroke, and just 8p on dementia, the researchers calculated.

Source Mail Online

People with dementia need care at end of their lives

Dementia is a terminal illness and nearly 5,000 people every year die from it in Scotland.

However, not enough people with dementia at the end of life are getting the care that they need, an issue to be discussed at the Scottish Parliament’s Cross-party group on dementia this week.

Living and Dying Well with Dementia in Scotland, our report published earlier this year, discussed a number of barriers faced by people with dementia at the end of life of their life.

The final stage of dementia is comparable with other terminal illnesses as the prognosis is often similar and it’s clear that palliative care would be of benefit.

Holistic care including pain and symptom management, as well as emotional and spiritual needs support people living with a terminal illness over the last years and months of life. Only two in ten patients who died of dementia received palliative care and those that did only received it in the last few weeks of life.

Many health practitioners do not recognise dementia as a terminal illness.

Often it is not listed as the cause of death on the death certificate with other conditions recorded, such as pneumonia or senility.

It is likely that there are many more than 5,000 people who die of dementia each year, but this is not being captured. There are currently 88,000 people living with dementia in Scotland and this expected to double in the next 15 years.

Many dementia patients would like to receive their care at home, but are more likely to die in hospital. Dementia patients are also more likely to be admitted inappropriately to accident and emergency, and there is evidence of a lack of advanced care planning. More needs to be done to tackle these challenges.

The Scottish Government has published two national strategies for dementia and we would like to see end of life care a focus of their upcoming third national strategy.

Progress must also be measured against the Standards of Care for Dementia in Scotland. Ensuring that all people at the end of life that need palliative care get it, regardless of their diagnosis, must be a priority.

• Richard Meade is Marie Curie’s head of policy and public affairs, Scotland

Source The Scotsman

Brain tumour boy Ashya King free of cancer, parents say

The parents of five-year-old Ashya King, who were detained after taking him abroad for brain tumour treatment, say their son is now free of cancer.

Brett and Naghemeh King were held in prison in Madrid last summer after taking their son from hospital in Southampton against medical advice.

They took him to receive treatment in Prague that was unavailable in the UK.

The NHS Trust that treated Ashya has declined to comment on his current condition.

Mr King has told the Sun newspaper a recent scan showed “no evidence” of the tumour.

Mr and Mrs King took Ashya out of Southampton General Hospital last August, after disagreeing with doctors about his treatment and deciding to seek proton beam treatment abroad.

They took him to Spain but were arrested at the request of the British authorities and held in Madrid’s Soto Del Real prison.

The couple were kept in the jail for more than 24 hours before being released when efforts to extradite them to the UK were abandoned, with prosecutors saying they were happy any risk to Ashya’s life “was not as great or immediate as… originally thought”.

Ashya had been diagnosed with a medulloblastoma, a type of brain tumour, which was successfully removed by surgeons in Southampton on 24 July. He then had a further operation on his brain on 22 August.

As a result of these procedures he was unable to speak, unable to eat or drink on his own and relied on a food pump.

In order to help prevent a return of the tumour, his parents wanted him to be given proton beam therapy – a treatment the NHS does not provide in the UK, although it does refer patients to other countries for treatment.

Proton therapy uses a form of radiation that targets cancer cells while leaving healthy tissue virtually untouched.

An expert’s view

It is very gratifying to hear that he is in remission, and if time goes on and he holds that remission, hopefully that equates with cure.

I do not agree that he could not have been in a similar situation had he had orthodox X-ray radiotherapy, which is going on to a very high standard in all the departments in this country.

That’s not to say there are no advantages of protons, but I think we could have achieved the remission he is in now with standard radiotherapy.

This country sends approximately 150 selected children to the United States for proton beam radiotherapy every year, so we recognise the advantages and send that number of children abroad for protons.

To the credit of the NHS, we are funding two cyclotron-based proton systems for this country, in London and in Manchester.

Dr Nick Plowman, senior clinical oncologist at Great Ormond Street children’s hospital, talking to BBC Radio 4’s World At One

Iva Tatounova, of the Proton Therapy Centre in Prague, said news of the recent scan was “fantastic”.

“It’s what we’ve all be working towards,” she said.

Ms Tatounova said the news had showed the efficacy of proton therapy “in cases of kids who do need irradiation”.

University Hospital Southampton NHS Foundation Trust said it would be up to Ashya’s clinical team in Spain or independent expert oncologists to comment on his current condition and the validity of the claims.
Ashya was taken to a hospital in Prague on 9 September, the week after his parents were in jail

It previously said Ashya’s chances of recovery with regular treatment had been “very good” and there would have been “no benefit to him of proton radiotherapy over standard radiotherapy”.

Dr Pete Wilson, chief paediatrician at the hospital, told the BBC at the time: “Refusing treatment for a child is exceptionally serious. This is a young lad who has a very, very good chance of survival if he receives rapid treatment.”

But Mr and Mrs King took their son from the hospital to Spain, where they have a holiday home, and arranged treatment at the Proton Therapy Center in Prague. While they were in prison in Madrid, Ashya was being treated at a hospital in Malaga.

The Proton Therapy Center said last September it had received full medical reports from Southampton Hospital and that Ashya was required to undergo two cycles of chemotherapy before he could receive the proton treatment.

What is proton beam therapy?

  •     It uses charged particles instead of X-rays to deliver radiotherapy for cancer patients
  •     The treatment allows high energy protons to be targeted directly at a tumour, reducing the dose to surrounding tissues and organs
  •     In general, it gives fewer side-effects compared to high energy X-ray treatments
  •     It can be used to treat spinal cord tumours, sarcomas near the spine or brain, prostate cancer, lung cancer, liver cancer and some children’s cancers
  •     In December 2011, the UK Department of Health said that proton therapy will be made available for patients in London and Manchester from 2018

Sources: NHS England, Cancer Research UK

He arrived in the Czech Republic on 9 September, six days after his parents were released from prison.

In an interview with the Sun, Mr King has said his son is free of cancer, recovering at the family’s Spanish home, starting to speak again and enjoying playing with his brothers and sister in a nearby park.

Mr King told the newspaper: “It’s incredible news. We are absolutely delighted. It has justified everything we have gone through because things are working out for Ashya.”

Sourced from the BBC Online

‘Miracle’ stem cell therapy reverses multiple sclerosis

 A pioneering new stem cell treatment is allowing multiple sclerosis sufferers to walk, run and even dance again, in results branded ‘miraculous’ by doctors.

Patients who have been wheelchair-bound for 10 years have regained the use of their legs in the groundbreaking therapy, while others who were blind can now see again.

The treatment, is the first to reverse the symptoms of MS, which has no cure, and affects around 100,000 people in Britain.

The two dozen patients who are taking part in the trials at the Royal Hallamshire Hospital in Sheffield and Kings College Hospital, London, have effectively had their immune systems ‘rebooted’.

Although it is unclear what causes MS, some doctors believe that it is the immune system itself which attacks the brain and spinal cord, leading to inflammation and pain, disability and in severe cases, death.

In the new treatment, specialists use a high dose of chemotherapy to knock out the immune system before rebuilding it with stem cells taken from the patient’s own blood.

Stem cells are so effective because they can become any cell in the body based on their environment.

“Since we started treating patients three years ago, some of the results we have seen have been miraculous,” Professor Basil Sharrack, a consultant neurologist at Sheffield Teaching Hospitals NHS Foundation Trust, told The Sunday Times.

“This is not a word I would use lightly, but we have seen profound neurological improvements.”

During the treatment, the patient’s stem cells are harvested and stored. Then doctors use aggressive drugs which are usually given to cancer patients to completely destroy the immune system.

The harvested stem cells are then infused back into the body where they start to grow new red and white blood cells within just two weeks.

Within a month the immune system is back up and running fully and that is when patients begin to notice that they are recovering.

Holly Drewry, 25, of Sheffield, was wheelchair bound after the birth of her daughter Isla, now two.

But she claims the new treatment has transformed her life.

“It worked wonders,” she said. “I remember being in the hospital… after three weeks, I called my mum and said: ‘I can stand’. We were all crying.

“I can run a little bit, I can dance. I love dancing, it is silly but I do. I enjoy walking my daughter around the park in her pram. It is a miracle but I can do it all.”

However specialists warn that patients need to be fit to benefit from the new treatment.

“This is not a treatment that is suitable for everybody because it is very aggressive and patients need to be quite fit to withstand the effects of the chemotherapy,” warned Prof Sharrack.

Charities welcomed the research but also urged caution.

Dr Sorrel Bickley, Research Communications Manager at the MS Society said: “This new study reports very encouraging findings, which add to a growing body of research into stem cell transplantation in MS. However, there are limitations to how we can interpret these results because there was no control group used, which means we can’t be sure the results are robust.

“Momentum in this area of research is building rapidly and we’re eagerly awaiting the results of larger, randomised trials and longer term follow up data.

“New treatments for MS are urgently needed, but as yet there are no stem cell therapies licensed for MS anywhere in the world. This means they aren’t yet established as being both safe and effective. This type of stem cell therapy is very aggressive and does carry significant risks, so we would strongly urge caution in seeking this treatment outside of a properly regulated clinical trial.”

The research was published in the Journal of the American Medical Association.

Article was sourced from the Telegraph Online

Government pledges £300m on dementia research

More than £300m is to be spent by the government on research into dementia, the prime minister has announced.

David Cameron said an international dementia institute would be established in England over the next five years in a bid to make the UK a world leader for research and medical trials.

Some 1.3 million NHS workers will also receive additional training in how to care for people with dementia.

The PM said dementia was “one of the greatest challenges of our lifetime”.

There are approximately 850,000 people living with dementia in the UK, with the number expected to hit a million within the next 10 years.

‘Bold ambition’

The government said a separate multimillion-pound fund would be launched within weeks to help establish an international investment scheme to discover new drugs and treatments that could slow the onset of dementia, or even deliver a cure, by 2025.

It hopes the global fund will bring together investment from the private, public and philanthropic sectors under a single scheme to pay for research projects into the disease.

Faster assessments by GPs are also included in the prime minister’s challenge on dementia 2020 plans.

The prime minister first launched the dementia challenge for England in March 2012, building on the previous government’s national dementia strategy.

Mr Cameron visited High Wycombe to meet people with dementia and dementia friends – people who are able to spot signs of the illness and help sufferers.

He said: “What today’s announcement is about is a very simple but bold ambition, and that is to make the United Kingdom the best place on the planet in terms of researching into dementia, in terms of diagnosing people with dementia and then in terms of treating, helping and caring for them.”

Signs of dementia

  •     Struggling to remember recent events
  •     Problems following conversations
  •     Forgetting the names of friends or objects
  •     Repeating yourself
  •     Problems with thinking or reasoning
  •     Confusion in familiar places

The NHS workers receiving extra training on how to provide best standards of care for people with dementia will range from surgeons to hospital porters, the government said.

There are also plans to give three million more “dementia friends” training in how to support those with the condition.

Other pledges include having the majority of people in England living in “dementia-friendly communities” in five years’ time by making shops, transport and other public places more accessible to people with the condition.
Alzheimer’s patient Two thirds of dementia sufferers in the UK are women

Labour’s shadow health secretary Andy Burnham welcomed the announcement but said more needed to be done to support dementia sufferers now.

He said: “Hundreds of thousands of vulnerable older people have lost social care support since David Cameron entered Downing Street. Social care in England is close to collapse but this government is in denial about it.”

Professor Simon Lovestone, from Oxford University, said recent trials for new drugs had failed.

“We now need to do better clinical trials, we need to do them earlier in the disease process, and for that we need tests for early diagnosis and we need better drugs,” he said.

“And I think that the announcement that’s been made today, together with the investment that’s already been made in the UK, puts the UK at the leading front of a truly international effort that will actually deliver on this.”

Professor Nigel Hooper, dementia researcher at the University of Manchester, told BBC Breakfast £300m was “a great investment” but said cancer research received five times as much funding globally as dementia.

Initial dementia assessments will take place in an average of six weeks and will be followed by support such as informing sufferers of local services that can help them, as well as advice for their carers.

Source BBC News