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Clinical studies in minors: The largest abuse in medical research since the Tuskegee trial

Blog post written by Dr Klaus Rose, author of ‘Blind Trust’, now officially launched.

 

My new book, Blind Trust, deals with a topic that many in the health and pharmaceutical world would prefer to ignore and many journalists have proved nervous about covering. Which is why I would like to reach out directly with this blog post and tell you a bit about it and why so many find this topic uncomfortable. If you have a sick child, if you raise money for a paediatric charity or for paediatric research, if you are a doctor seeing child, and especially adolescent, patients, you need to know what is in my book.

The picture on the cover is an old illustration of the fairy story, Hansel and Gretel. These children, abandoned in the forest and starving – a metaphor in my book for being desperately ill – come across a house made of ginger bread and other treats and can’t resist eating it; the temptation is too great. The owner of the house is an old woman who seems friendly and welcoming (she represents the authorities running and sanctioning unnecessary research to boost their careers), but we, familiar with the story, know her sugary house is to tempt children in so she can exploit them. Just as you know the story of Hansel and Gretel, I would like you to know the many stories in Blind Trust so that you can be on your guard in these situations too.

The background is laudable enough. Clinical studies evolved with modern drug development. When penicillin was first produced industrially, during World War II, complicated studies were unnecessary as the benefits were so clear – patients with bacterial infections were literally snatched from their deathbeds by this new drug. The development of new pharmaceuticals then accelerated, and the range of treatable  conditions expanded to include pain, insomnia, diabetes, birth control and much more. At this time, a German company developed and marketed a drug whose name is probably familiar – thalidomide – for all sorts of ailments but including insomnia, nervousness and nausea in pregnancy. In the late 1950s, it was discovered that it had caused thousands of severe birth defects worldwide. This became a turning point in drug development. From 1962 on, US law demanded studies for all new drugs.

Separately, back in the 1950s, toxicities had been reported in babies, and especially premature babies, treated with antibiotics. To avoid lawsuits for damages in the litigious US, pharmaceutical companies began including ‘pediatric warnings’ with information about their products. This, in turn, led to the idea that all children were ‘therapeutic orphans’ though they were being successfully treated for an increasing range of problems, including many cancers.

Legitimate concerns for babies became the narrative that all drugs were dangerous in all children if not tested separately, based on the concept that ‘children are not small adults’. This mantra invaded medicine, science and politics. Confidence in science was high. US lawmakers decided to reward pediatric pharmaceutical studies by extending drug patents. Companies could sell drugs longer at a higher price if they funded research. And here the big challenge began.

No need to be a doctor to know that 15-year-old teenagers who are bigger and stronger than mom or dad are physically mature. No need to be a shrink to know that emotional and mental development usually lags behind. The FDA defined ‘children’ first as being below 17; today the cut off is below 18 years. But drugs treat the body, not the legal status. ‘Pediatric’ studies in minors, including physically mature adolescents, became big business for researchers. All scientists complain about a lack of funds. For ‘pediatric’ research, a bonanza started. It became worse when the European Union (EU) expanded the obligation for ‘pediatric’ studies in Europe. Yet many of these studies were futile in adolescents and massively exaggerated in young children. Minors don’t remain as vulnerable as newborns until they come of age. Today, thousands of questionable ‘pediatric’ studies are being performed worldwide with the young people participating, and their parents, sadly assuming they are contributing both to their own chances of recovery and to the future health of others. The reality is, many may be receiving placebo treatments to satisfy the regulatory authorities when it is already clear what active treatments are safe and effective.

The opinion that most pharmaceutical studies in children and young people are excessive is not shared by most medical and  pharmaceutical professionals worldwide. In fact, I am one of very few. But I know what I am talking about. I am a medical doctor and was global head of pediatric drug development at two large international pharma companies. I am independent now, and can publish papers and write books about this challenge. In this position I can say categorically that the definition of children as under 18 is a legal, not a medical one. There are no drugs that work in adults but not in children. Kids are not another species. The focus of research in children who are not physically mature should be dosage and safety, not efficacy that is already known. A further issue is drug toxicity in babies. Dosage studies and safety observations are much less demanding, expensive and testing for participants than complex international ‘pediatric’ studies that repeat in young people before their 18th birthday what we already know to be the case after they turn 18.  Studies in minors can save lives, or can harm. Blind Trust shows you how to tell the difference. I also offer online seminars for pharmaceutical companies in which I explain how to push back against potentially harmful studies demanded by the FDA and the European Medicines Agency (EMA) so that research funding can be focused where it will genuinely make a difference.

 

To  read the first chapter of Blind Trust for free, click here.

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Kindness within the Community

As it is the season for giving, caring and community, we want to celebrate all the kind things our wonderful authors do, not just at Christmas, but all year round. In our latest blog post, a selection of our authors tell us about the incredible organisations they work with to encourage you to spread kindness this Christmas.

Sara Challice – Author of ‘Who Cares?’

Whilst I cared for my husband, I found great support in the community from local charities offering a variety of services – for both of us.

One charity, INS (Integrated Neurological Services), based in Twickenham, not only gave my husband, Neal, one-to-one physiotherapy, which was a Godsend due to his waning mobility and falls, but they supported me as a carer. I realised how vital local charities were and within six months I had become a trustee on their board – offering my graphic design skills, along with giving a carer’s insight to improve services.

It didn’t stop there. The charity continued to give to me in return, as I gave to it. I learned many things, not just about the charity, but of supporting those with neurological conditions.

During this time, I joined their Mind Body Spirit group, enjoying the meditations and learning of books to empower and improve health and wellbeing. Five years on, I now take this group myself, having become a mindfulness instructor. There is always a great turnout to this supportive and nurturing group, discovering ways to help yourself, even if you have a neurological condition, such as Parkinson’s, Multiple Sclerosis, stroke, or if you are a carer.

As with Christmas time – it is in the giving that we receive – and similarly, after I received from this wonderful charity, I have been giving to it, and still continue to reap the benefits. Kindness is truly all-encompassing.

 

Dr Eugene Kongnyuy – Author of ‘No Pills, No Needles’

The United Nations Population Fund (UNFPA) is the lead UN agency for sexual and reproductive health and rights. In the past 12 months, my work with UNFPA involved supporting fragile health systems in Mali and the Democratic Republic of Congo (DRC) to enhance access to contraceptives, skilled birth delivery and assistance to survivors of gender-based violence.

File:UNFPA logo.svg - Wikimedia CommonsBoth countries are affected by humanitarian crisis and the health systems are very fragile and weak. Due to the high level of insecurity caused by non-state armed groups, transporting contraceptives, medicines, medical supplies and equipment to reach the last mile is a major challenge. The weak health systems were equally hit by the Covid-19 pandemic, epidemics (including Ebola in the DRC) and natural disasters (including the Nyiragongo volcanic eruption in the DRC).

Despite these challenges, my colleagues and I successfully reached millions of women with contraceptives in both countries. We also supported in-country contraceptive logistics (warehousing, distribution and inventory management) and trained healthcare providers on contraceptive counselling and provision.

We also renovated and equipped maternities and where no health maternities existed, we installed prefabricated maternities to enhance access to skilled birth attendance. We recruited midwives where there were no midwives to ensure that each maternity provides skilled birth delivery. We equally supported midwifery training schools by updating their training curricula to meet international standards, trained midwifery tutors and provided training equipment to midwifery schools. While obstetric fistula has virtually been eliminated in developed countries, thousands of women and girls develop fistula in Africa due to lack of skilled assistance at birth. In both countries, we supported obstetric fistula repair by providing surgical repair kits and training doctors to repair fistula.

Due to the humanitarian crisis, gender-based violence is a big problem in both countries and is sometimes used as a weapon of war. The violence takes several forms including sexual, physical, emotional, economical, domestic etc. Our job was to provide assistance to survivors of violence and to ensure safeguarding for women and girls affected by crisis. We set up one-stop centres in hospitals to provide comprehensive services for survivors – medical, psychosocial, judiciary, police and socioeconomic reintegration. The one-stop centres ensure that survivors do not need to be referred elsewhere as they receive all services including access to the police and a lawyer in a single centre.

While responding to the immediate humanitarian needs, my work also involved working closely with the Government to build national capacity and systems including policies so that the Government can eventually take over – we recognize that it’s the primary responsibility of Governments to provide the basic social services and to respect, protect and fulfil the human rights of its citizens.

 

Sarah Russell – Author of ‘The Bowel Cancer Recovery Toolkit’

One of the things I do in terms of community and ‘giving back’ is the work I’ve been doing with my local hospice. I’ve volunteered with Hospice in the Weald for 4 years as an exercise specialist and work with the physio and OT team. I run exercise groups for palliative patients under hospice care and since the beginning of the pandemic I’ve been doing them on zoom. Which has worked brilliantly as people have been at home and needing to shield and keep themselves safe, but we’ve still been able to keep them active and mobile.

People often wonder how exercise can help palliative patients, and if it’s really safe.. but the benefits are amazing. It helps people to stay strong, mobile and independent for longer, in some cases extending life. But the most important aspect is that people feel they have a little bit of control over their lives, they are doing something to help themselves, even when they are really unwell. For that short time when doing their exercise class they don’t feel like a patient, and it gives them positivity and encouragement and a little bit of normality. It really is wonderful that we can give that to people through the power of exercise, even at the end of their lives.

 

Sandra Hood – Author of ‘Feeding Your Vegan Child’

In 2020 I took on Pixie who was an ex-street dog from Macedonia. Due to her nervousness and Houdini abilities, Pixie had had a number of homes in the UK before finding her way to Love Underdogs.  Love Underdogs is a charity that does amazing work with stray unwanted street dogs, mainly from Romania, and took Pixie on to find her a home.

I had a dog flap fitted and the garden was, I believed, escape proof. After having Pixie for a couple of weeks, I had to go into work early in the morning. My phone was switched off at work but when I checked it at lunch time there were numerous messages. Pixie had been found, some 11 miles away. She was eventually trapped in a driveway.  The police took her in, got details from her ID tag and contacted Love Underdogs and me.

When I collected Pixie she was absolutely exhausted and very pleased to see me. It was only the next day that a neighbour told me he had seen her jump out of the upstairs bedroom window to chase my car. Someone submitted the story to the paper and she made page 3!

Love Underdogs needs to be recognised for its wonderful work.

I would also like to mention Goole RSPCA Cats which I support. My sister and niece are volunteers for the charity and they do amazing work with rescuing cats that can be in terrible states. For example, my niece Georgina fostered Marigold in December last year, a cat that was found in a field, severely underweight, one-eyed and with a distinctive crinkled ear. Most likely abandoned due to her pitiful state, she wasn’t expected to make Christmas last year as she was so ill.  No one has been interested in giving Marigold a permanent home, so now Georgina is going to adopt her.

 

Dr Raymond Perrin – Author of The Perrin Technique 2nd Edition and The Concise Perrin Technique

This is the story of how the research that led to my doctorate and then to my book The Perrin Technique came about – with a little help from above…

Medical research comes with a hefty price tag even for relatively small projects, so when I embarked on my research project at the University of Salford in the early 1990s, I needed to establish the FORME charitable trust in order to attract other trusts to donate the £100,000 needed to test if my osteopathic techniques could help ME/CFS. We appealed widely through the media but to no avail. We had a few thousand pounds – enough to buy a computer or two but not to run a controlled clinical trial involving at least 60 participants. So, the trustees of the charity decided to hold an emergency meeting to discuss closing down the charity and donating our meagre funds to a national ME Fund for Osteopathic Research into ME - FORME charity, ending my dream of undertaking this research.

The meeting was scheduled for a Thursday evening but just two days before I received a phone call that was to change everything. It was from a Mr Barclay who said he had read about our appeal and wanted to know if he and his brother could meet me at his hotel. When I inquired where his hotel was he replied Monte Carlo! Two days later I was sitting with Frederick and David Barclay in the Mirabeau in Monaco, one of the many hotels that they owned around the world. They wrote a cheque then and there for £50,000 and said the rest would be sent in a few months. An hour later I was heading for my flight home at the same time as the trustees were meeting to disband the charity – a meeting I interrupted to tell them of the Barclays’ generosity to the surprise of all.

Thirty years on, with a few more research projects completed, all funded by charity and supported by volunteers, we have provided much evidence to support the importance of lymphatic drainage in ME/CFS and we are now just about to embark on a new study at the University of Manchester, together with the NHS, into Long Covid, again funded by generous organisations from the public. I shall never forget the generosity of all concerned without which this research would never have begun.

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Ending lockdown for people with dementia and their carers

Blog post written by Mary Jordan, author of ‘The Essential Carer’s Guide’ and ‘The Essential Carer’s Guide to Dementia’.

 

If lockdown has been hard for many people, then emerging from lockdown may cause its own problems! Many have been made so afraid of infection that they have refrained from taking steps back into society again even when this was allowed. I have clients who tell me that they have not left their home for over a year. Many are really afraid to visit their GP (even when they can get an appointment) or to go to the hospital for important outpatient appointments. Some have avoided dental checks or eyesight appointments.

Carers know instinctively that routine is good for those with dementia – they find it easier to cope when there is a set pattern to the day and more difficult to cope when their routine is upset. This past year has disrupted many lives. Routines of social interaction have been interrupted and disturbed. Familiar visitors have stopped visiting. Family have kept their distance. Even those of us who are able to understand the reasoning behind the disrupted routines have been disturbed and depressed – how much more difficult for those unable to understand what is happening?

I have found it quite disconcerting when people have told me that they have become ‘used to’ staying at home and are reluctant to go out and meet others because I know that meeting up with other people, talking, touching and mixing are very important for those with dementia. Perhaps it is easy to forget how vital such activities are for carers too.

The Cognitive Stimulation Therapy groups that I run have been able to continue (under Covid-secure guidelines) since September and people have been very grateful for this, but the Dementia Café has not been allowed to run and carers have told me that they really missed this facility. It seems that the simple chance to meet along with the person they are caring for, in an informal social setting was considered by many to be a lifeline.

Now, hopefully things are changing again and we can once more meet up with family, friends and supporters.  I feel it is important to embrace this new ‘opening up’ of society both for people with dementia and for their carers. But perhaps we should also take note of the fact that life can change suddenly and unexpectedly and that things can happen that are beyond our control. We cannot plan for every contingency but we can all remain open to considering change and accepting the need to adapt – and this is particularly true when caring for someone with dementia.

 

‘Solutions in Dementia’ by Mary Jordan (due in 2022) addresses the many occasions of dramatic change that can happen as dementia progresses and highlights some solutions that have been found helpful.

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Why Volunteer?

With both Volunteers Week and Carers Week this month, it is an important time to think about what we can do for others. Author of ‘Who Cares?’ and winner of The People’s Book Prize 2020/21 Best Achievement Award, Sara Challice, explains how you can offer help to others through volunteering and why it is important to get involved.

I think we are all aware of the countless volunteers who have rallied round to help during this last year’s pandemic. In giving just a little bit of time, we can make a huge difference for many.

I discovered our local charities and the great work they do, after my husband became disabled from a brain tumour. Although he was given six weeks of physiotherapy from our hospital once he came home, this service was stopped soon after and his file was closed. I was then left attempting to pick up a man twice my size from the floor as he continued to have falls and deteriorated further.

During this time, I was told of a charity called INS (Integrated Neurological Services). I had never heard of them – why would I? They were in our local area, and offered one-to-one physiotherapy plus more, and I would also receive support as a carer. We immediately registered with the charity and met a wonderful group of people, who helped support us both during our challenging times.

Had I not become involved with this charity and and the the great work they do, I wouldn’t have known about the difference they were making in others’ lives. I became a trustee for them and discovered that there were times they were financially hand-to-mouth. You would naturally presume these charities would just be there for us forever, as and when we may need them, but that’s just not the case.

Many who have been diagnosed with a neurological condition and those caring for them, are often isolated, left struggling at home – and you don’t need to be old! Any of us may suddenly need this vital support.

Charities and the voluntary sector help to connect and support within our communities – empowering and ensuring a better quality of life for many, even keeping them at bay from hospital.

But what do you, as a volunteer, receive from your altruistic actions?

If you offer to volunteer, it doesn’t have to take up much of your time. You can make a real difference in others’ lives – more than you even realise! You will most definitely gain knowledge and meet some wonderful and inspiring people. Plus, in being kind and offering to help, is actually beneficial for you. There is a term known as the ‘Helpers High’ – as you give to others, this distracts you from your own problems, releasing endorphins making you feel good. Helping others gives you a sense of purpose, boosting your serotonin levels which lowers stress and improves your mood.

And in offering to volunteer, this can create a positive ripple effect, inspiring those around you. I have certainly had friends and family who have become involved with the various charities I have supported over the years.

So if you’ve been thinking of offering a bit of time to help others, why not get in touch with either your local or national charities, for a cause that may be close to your heart. You never know, you may learn new skills, gain new insight and meet some wonderful people as I have.

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How to Survive the Stress of Caring, and Look After Your Own Health

Blog post written by author of Who Cares?, Sara Challice. Who Cares? has been shortlisted in the Non-Fiction category of The People’s Book Prize 2020/21. Click here to give it your vote.  

 

Caring for a loved one is, without a doubt, a kind and selfless act. Not only does it give another a better quality of life, it may even extend their longevity.

But whilst caring, your altruism could cost you more than your time and energy, because around 70% of carers fall either mentally or physically unwell – this included myself!

During my time out recovering, I realised I needed to make changes so as not only to survive my caring role, but also to regain my health and start enjoying life again.

So how can you overcome the stress of caring, to become more resilient and safeguard your own health?

1. Check in with yourself

As a carer, you’re often so busy being there for everyone else that you ignore your own health. And during the pandemic, this is ever more so whilst trying to talk to your GP, let alone arrange a hospital appointment – all time-consuming tasks that take even more of your precious energy and time.

You may even be suppressing your emotions, as you’re so busy tending to and protecting those around you who are almost certainly classed currently as ‘high risk’ for coronavirus. The pressure can build up, bit by bit, and go unnoticed until crisis strikes.

Do you have a good friend or family member you could check in with for a short time, once a week? This can be either face-to-face (socially distancing of course!), over the phone or via Skype. Or you could try journaling – writing down your feelings and the issues you’re experiencing. Observing what is actually happening can help lead you to making better choices for yourself, as well as for your loved ones.

2. Take a break

If you see each day as a list of chores – just doing this, just doing that – you’ll end up simply falling into bed exhausted!

Even though times are ever more challenging, you still need to have regular breaks, as well as have quality time. You’re not just here for a loved one, you are also here for you!

Try taking a short break between each chore, even if it’s 10 minutes. This will help you pace the day. You could jot down a list of things you enjoy doing during these breaks, such as reading a magazine, having a kip, or calling a good friend for a chat. You can then pick from your ‘break menu’, when you stop for a rest.

3. Focus on the good stuff

There is often a lot to deal with and carers are often in survival mode – focusing on the issues, to ensure everything and everyone is okay – but this does not make for an enjoyable life.

What are you happy and thankful for in your life? It may just be a hot shower that morning, or your comfy bed. It could be having loving and kind friends or patting your pet. If I’d had a bad day, I would climb into bed and think of five things I was grateful for that day. It always put a smile on my face and put me in a better state of mind before sleep.

Just remember to be kind to yourself and recognise all that you do. You really are amazing, being there for loved ones. Make sure you are also there for you!

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An Attempt to Prevent the Death of an Old Woman

A poem by Glenn Colquhoun, author of Playing God – poems about medicine

 

Old woman, don’t go, don’t

go outside into dark weather

Out into the night’s wet throat

There is cooking on your stove

Old woman, don’t go.

 

Don’t go old woman, don’t go

Down beneath that deep sea

Down onto its soft bed

There are still fish to be caught

Old woman, don’t go.

 

Don’t go old woman, don’t go

Bent into that slippery wind

Listening for its clean voice

There are songs still left to sing

Old woman, don’t go.

 

Don’t go old woman, don’t go

Walking beside that steep cliff

Watching where the sea flowers

There are daisies on your lawn

Old woman, don’t go.

 

Don’t go old woman, don’t go

Lifting in those strange arms

Caught against that dark chest

There are people left to hold

Don’t go, old woman, don’t go.

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Coping with anxiety in this time of crisis

anxiety in a time of crisis

As we are all already aware, this is a very distressing and unsteady time for many. I would like to offer some hope to those who are suffering from anxiety and anxious feelings, whether you are  or have been a sufferer of anxiety in the past, or whether the unsteadiness of this current time has caused the feelings of anxiousness and unease, I hope some of the strategies below will be able to help you cope.

  1. If you have read any of my ‘Hope’ books, you will be very aware that I am a great advocate for positive exercise and mental well-being. Many of us would leave the house on a regular basis, whether it was walking to work, or walking to drop the children at school, or a regular member of the gym, we are finding ourselves suddenly cooped up with our regular activities on hold. Making sure you are still getting regular exercise is paramount to our mental health, there are so many exercise videos on YouTube and online from beginner HIT sessions to yoga and Pilates. If you are able to leave the house, taking a brisk walk whilst getting fresh air will be invaluable. A good nights sleep and eating a balanced diet also complement exercise for their benefits on the mind.
  2. Onto my next topic….the media….whilst it is extremely important that we are all keeping up to date with the current situation, it is also important that we take our minds off it for our own sanity. Having a ‘media free’ or ‘tech free’ time each day will help us to focus on other topics and calm our minds. I love doing puzzles and find them very therapeutic. Other activities could include, reading a book, or even cooking a nice dinner.
  3. Spending more time at home is probably on most people’s wish lists, however, when it is suddenly thrown on us, we don’t know what to do with ourselves. The risk of not being able to socialize as we usually would could lead to a low mood slowly setting in. Getting up each day and giving yourselves a little self-care will go a long way to keep our minds positive and fresh.Wash your hair, shower regularly, put on fresh clothes, and you will feel ready to face the day.

Blog post written by Hammersmith author, Lynn Crilly, author of Hope with Depression, Hope with OCD and Hope with Eating Disorders

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A Carer’s Christmas

Carer's at Christmas

The festive season is approaching and many of us look forward to enjoying this time. But for those caring for a loved one, Christmas can add an extra layer of stress, on top of everything else they are contending with.

Whilst caring for my husband, I still loved Christmas time, but immediately after, I always fell ill. I then spent January recovering, which made caring even more difficult.

So with this in mind, here is some useful advice to help you enjoy the season as you continue to care, so as not find yourself completely exhausted by the end of it!

  1. Spend a few moments planning the next three weeks. What do you really have to do and what do you not have to do? For example, do you always make the Christmas cake? Why not buy in this year and save yourself the time and energy? Just by making a few simple choices, can help to relieve us of any unwanted stress.
  2. We can find ourselves writing Christmas cards into the night! I know I certainly have. Then there’s the expense, plus the thought of climate change and all those trees. Why not write just a handful of cards to your nearest and dearest, and send an email or text to friends, letting them know you will be donating a bit of money to charity instead of sending them a card?
  3. We want to say yes to all things! But if you are caring, you only have so much energy, plus limited time and money. So instead of trying to cram in and see everyone over the next few weeks, why not suggest meeting some folk in the New Year to spread it out? This will give you a bit more space and give you something to look forward to in January.
  4. All that Christmas shopping can leave anyone frazzled. If you don’t have a problem with shopping online, this can certainly take the pressure off, avoiding the crowds and shops. Also, you may get some better deals online, as well as having your gifts delivered to your door, without leaving the house.
  5. Listen to your body. If you’re already feeling exhausted, and you have planned to go out and see friends or family, let them know how you really feel. Take the time to rest and recoup. If you try to do too much, and become completely depleted, your immune system may become low, leaving you susceptible to picking up a bug. The last thing you or your loved one needs. We just can’t please everyone all of the time. I know. I’ve tried! Let others know how you feel and if they really care, they will understand.
  6. Enjoy the simple pleasures. I love the fairy lights going up in the living room and having the candles on. Why not invite friends and family over instead of going out for an evening? Even though you will then be hosting, it can still help to save money and the energy,or getting your loved one out to a destination in the winter months.

Finally, we want to make the most of this special time, because for many of us, we know we may only have limited time with our loved one. This is why caring can be so very difficult. So be kind to yourself, ensure you take regular breaks and rest, so that you can make the most and enjoy the festive season.

Blog post written by Sara Challice, Who Cares? How to care for yourself whilst caring for a loved one. Available from Hammersmith Health Books, April 2020. 

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Five Questions with Paul Brice, author of COPD Innovative Breathing Techniques

Paul Brice and patients

What was the inspiration behind COPD?

I had been working with COPD patients for nearly 7 years when I first considered writing this book. Initially this was because patients kept on telling me that they felt so much better using the techniques I used, and even people who had previously undertaken pulmonary rehabilitation told me that they had not been shown these exercises before. I did not think I was doing anything special until I researched what other pulmonary rehabilitation programmes delivered to their patients.

Without realising it, the skills and knowledge I had acquired as an athlete and a high-performance sports coach had helped me recognise how to use posture and movement to modify breathing and exercise capacity. I had found a way to communicate this to my patients in what they told me was clear, simple and logical.

I had developed a series of techniques to show my patients how they could use their bodies to breathe in a more natural and relaxed state, and a system to help them become more aware of the things that made them breathe poorly.

Only once patients had become more aware of how they could help themselves to breathe and move comfortably, would I introduce them into what could be called real exercise. The style and the intensity of exercise were staged and the rate of progress depended upon the individual patient.

Patients tell me they appreciate this gradual approach to their treatment, and I reiterate the fact by threatening to break into the song: ‘It ain’t what you do it’s the way that you do it….That’s what gets results!”

I started to write the book aware of the fact that the emphasis on posture and natural breathing meant that other conventional COPD techniques I had been taught were either no longer needed or were no longer relevant. It is with this in mind that I named the programme the ‘Brice Method’. I am very much aware that my method is likely to challenge some aspects of the conventional wisdom of breathing and exercise for COPD patients.

I had to write this book as I am passionate about helping other people with COPD benefit from the simple and effective techniques that my patients have benefitted from.

What was the most challenging part of writing the book?

There were two challenging aspects to writing COPD Innovative breathing techniques.

The first challenge was to ensure that the book was written at a level that would be suitable for patients with COPD, their friends and their families and not at a level for health professionals or practitioners.

When I started out writing the book, I was aware that other health professionals might skim read the book and look for evidence, references and a bibliography at the end of each chapter, all standard practice for medical/ health books. Quickly I realised that referencing the book in this way would make it totally unusable for the people who would gain the most from the book.

I was however, aware that because some of the postural techniques used at the start of the book can so dramatically modify the shape, size and mechanics of the patient’s lungs, there are a number of breathing techniques that follow, which would challenge the standard practice, and might stir up a bit of a furor amongst fellow professionals. In truth, I now welcome that latent debate.

The second challenge was to make patients aware that their COPD may not be the most restrictive health condition that they have. A high percentage of my patients find that once they have modified their postural habits and their breathing techniques, that their lungs are not the limiting factor when it comes to physical activity, but it is another health issue. Arthritis, chronic back or neck pain, acid reflux, shoulder immobility, and poor balance are all issues that can often restrict the patient’s ability to exercise. I believe that relaxed, natural breathing can only be done when the whole body is in a relaxed state and when it is relatively pain free. The unfortunate truth is that moving when you have not exercised in a while is going to be uncomfortable, so there is a section on identifying the difference between discomfort and pain, which is referred to at stages throughout the book.

What has been the most satisfying part of the writing process?

Having spent quite a lot of time on my own writing the book on my apple mac, taking the pictures and working with my daughter Lucy to adapt the images, the most enjoyable part of the book has been witnessing my simple word document morph into what I could recognise as being a proper book.

Before I started the project, I had a vision of how the book would look, and working with the publishing team has been a real eye opener as to the amount of work and expertise that goes into producing a completed book.

Surprisingly, having written the book, it has been particularly rewarding to search the top online book stores and see that the book is ready to order. I have searched for so many books over the years, wanting to learn things from other people, and to be referred to as an author on the likes of Waterstones, Amazon and Foyles will a take a little time getting used to.

What sort of people would benefit from reading the book?

The book is aimed fairly and squarely at the person who has been diagnosed with COPD, or a friend or family member. COPD is an overarching term that comprises many chronic lung conditions such as chronic bronchitis, bronchiectasis and emphysema, plus many more.

In reality there are a large number of people who have problems with their breathing, who might benefit from the techniques used in the book. The techniques are split into specific sections and even if a person has physical imitations that mean they cannot do the more active, later chapters in the book, most people seem to benefit with their breathing with the postural exercises and breathing techniques that make up the first half of the book.

Paul Brice and patients

Try this simple exercise to see if the book might help you.

You sit down comfortably on a dining chair and take a deep breath. If you can listen to where you feel the air going into the chest. If you feel any of the following…..

  • That you have to suck hard to get the air in
  • That the breath is short and unsatisfying
  • You cannot feel your chest expand
  • You only feel the air going in the top of your chest
  • You use your shoulders to lift the chest

…then the likelihood is you will get some benefit from the exercises and techniques in the book

I believe that breathing should be as natural and relaxed as possible, and the whole aim of the book is to help anyone with COPD breathe more easily.

How will people benefit from reading the book?

The aim of the book is to help show people with COPD how to get the most out of the lung function that they have remaining.

The book is structured so that the reader can learn what they need to do using a tried and tested step-by-step approach. They are encouraged to take things at their own pace, and only move forwards to the next stage once they feel they have mastered the section before.

Firstly the book shows the reader how they should use their lungs, and help them recognise what bad habits they might have developed that could prevent them from breathing more naturally.

I explain what they need to do to help overcome their bad habits using basic changes to their posture and make them aware of how simple body movements can be sequenced with the breath to help the body find a more natural breathing pattern.

The book explains how you can learn to maintain these new breathing techniques, using a homework plan, these are essentially micro workouts of 4 or 5 exercises that last between 3 and 5 minutes that can be done up to 4 times a day. This is how my patients overcome decade’s worth of inactivity, poor posture and bad breathing patterns within weeks or sometimes within days!

The book then goes on to suggest a range of exercises to improve the readers stamina and strength, whilst explaining what pitfalls to look out for along the way.

There is a landmark test that the reader can take at several stages throughout the book to help them monitor their progress and check that they are on the right path before moving on to the following stages.

If you would like to learn more about COPD, the first chapter of Paul’s book is available to read here

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The ‘D’ Word: Rethinking Dementia

When the brain is affected by dementia, logical thinking and reasoning ability are affected quite early on. However, the amygdala – the part of the brain that is the integrative centre for emotions, emotional behaviour, and motivation – is less affected. People with dementia (PwD) who have trouble processing logic and reasoning do not have a similar problem with their ability to feel emotion. Indeed, as far as research can show, people with dementia still feel happy, sad, afraid and so on, even after they can no longer speak or recognise people they know well, even when they need total support to live their lives. It seems, though, that most people – including many well-meaning carers – are unable to adjust their own behaviour and thinking to accommodate the continuance of emotional experience, along with the decrease in reasoning ability of the person they care for.

If someone has a broken leg we do not assume that they could walk on it ‘if they tried’. We do not suggest that they listen very carefully whilst we explain how to walk. We do not try to divert their attention so that they can walk without thinking. No. Instead we set the broken bone and maintain it in position with support (a leg-plaster). We allow them to rest the leg. We give them a crutch to aid movement and we accept that walking will be slow and difficult until the leg is healed. Similarly, if someone has part of their brain which is not functioning we should make allowances. We should try to keep the parts of the brain that do function in as good order as possible – by encouraging social interaction, physical exercise and general health. We should allow the brain to ‘rest’ when it needs to by not demanding actions which are no longer essential. We should supply a ‘crutch’ using memory aids, providing unobtrusive help and support. We accept that everything cannot be as it once was because this brain is not what it once was.

It is important, though, that society should recognise the relative importance of the emotions which come to predominate when logical thought and thought processing are deteriorating. Society in general does not much like domination by the emotions. ‘Civilised’ people should learn to control emotion and apply logic and reason to manage their everyday life, it is thought. But what if we can no longer use our logic and reasoning to help us come to terms with emotions? Suppose we are unable to understand and work out why we feel sad or happy? Imagine if we feel these emotions overwhelmingly, but we are unable to deal with them by a change of scene, by talking through our feelings, by taking actions to alleviate the misery or express the happiness. Imagine being no longer able to speak coherently enough to tell anyone how frightened you feel or how angry. What might you do? How might you try to express yourself? Perhaps you would try to hide somewhere, or to run away and escape. Or you might shout and get angry. Perhaps if no one made any effort to understand, you might try to use physical methods to show them how you feel.

This blog is taken from The ‘D’ Word: Rethinking Dementia by Mary Jordan and Dr Noel Collins