STRENGTH IN NUMBERS

Strength in Numbers dedicated to my late mother Kay

Ashya King’s Parents Put Him ‘At Risk’ – Report

I say “Bless Ashya’s parents” they saved his life and the quality of his life. I would have done the same, Joanna

Ashya King’s parents are criticised for taking him abroad for therapy in a report, which says he was “at risk of serious harm”.

The five-year-old was removed from Southampton General Hospital by Brett and Naghmeh King without doctors’ consent and taken to Prague for proton beam therapy in August 2014.

A report by Portsmouth Safeguarding Children Board into how agencies dealt with the case said he was placed “at risk of serious harm if anything untoward had happened with regard to the nasogastric tube”. It also added that the journey for Ashya to the Czech Republic “must have been difficult and if anything had gone wrong the consequences would have been significant”.

Mr King told Sky News tonight that the family has seen the report and has agreed with Portsmouth City Council that neither side will comment on its findings.  Last week, Ashya’s parents told Sky News they were pleased they’d decided on proton therapy as they returned to the Czech capital for a check on his progress.

Mr King said his son’s improvement had exceeded all expectations and Ashya was becoming “strong, more social and happier as a person”. “We are thankful that we did the research and we chose a treatment that was less aggressive than the one they were going to give to us because I’d hate to think with that treatment where would we be today,” he said.

Click on the link to read more

http://news.sky.com/story/1557813/ashya-kings-parents-put-him-at-risk-report

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Filed under: NHS, Self Help, ,

Sepsis – signs and symptoms of the killer disease you probably haven’t heard of

Not heard of sepsis? You’re not alone.

According to a poll by the UK Sepsis Trust, 40% of the public said they’d heard the word – but of those, only 40% knew it was a medical condition. It’s one we should all be aware of, however. According to the NHS, it’s estimated that more than 100,000 people are admitted to hospital with sepsis every year, and around 37,000 people will die as a result of the condition.

On Tuesday’s Good Morning Britain, W1A actor Jason Watkins – who is supporting the UK Sepsis Trust’s new pocket guide for parents about the infection – opened up about the loss of his two-year-old daughter Maude to the condition on New Year’s Day 2011.

“Every 3.5 seconds someone around the world dies of this condition,” he said. Explaining why more people aren’t aware of sepsis, he added: “It’s complicated by other symptoms. In our case, it was simply flu.”

What is sepsis?

Click on the link to read more

https://home.bt.com/lifestyle/wellbeing/sepsis-signs-and-symptoms-of-the-killer-disease-you-probably-havent-heard-of-11364002333630

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Filed under: Self Help, ,

Why do I need MyNotes Medical? Warning: Lack of notes can kill

We want to ask you:

What if better communication between patient and NHS could prevent needless illness or death?

Warning: Lack of notes can kill!

Every year, thousands of NHS patients suffer needlessly. Doctors are over­worked, mistakes are made and billions of pounds are wasted. The question is, why?

If you have ever been a patient, or your loved one has, you may know for yourself the confusion and stress that often occurs:

  • You don’t understand what the doctor or consultant is saying
  • Your story is not taken seriously
  • You find it difficult to recall your diagnosis or treatment, since you have no notes to refer to
  • Perhaps, as a result you are sent away with the wrong diagnosis, or you have to make several appointments.

This is critical:

You don’t understand everything that the medical professionals are asking or saying to you; no one seems to have access to your loved one’s medical history and you are worried that you may generalise, delete or distort something critical when telling people what they need to know. All of this wastes precious time in which you or your loved one could be receiving proper treatment.

The problem is down to a breakdown in communication between patient and consultant. And, the problem has been publicly recognised and acknowledged.

Trouble is, all too often the solution has been developed by medical professionals for the ‘benefit’ of patients but NOT by patients themselves and NOT from a patient’s perspective.

Would you feel better if you could

Take Video’s,  Record conversations, Take Photo’s that are automatically synchronised with your PC in date order to review, share and keep you in control?

Yes! That’s why you and your loved ones need MyNotes Medical. Written by Patients for Patients.

You are just one click away  http://goo.gl/3rf9c7

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Filed under: GP's, Hospital, NHS, NHS Blunders, Self Help, , , ,

Please show me that you really care

Do you want to make people’s lives better?

Do you want to make your children’s and your parents lives better?

Are you concerned with the amount of medical mistakes in the news?

Are you a thinker or a doer?

Do you really care? 

Click on the link and show me that you really care http://goo.gl/3rf9c7

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Filed under: A&E, Cancer, Care Homes, Dementia, Disabilities, Elderly, GP's, Hospital, Mental Health, Named & Shamed, NHS, NHS Blunders, Self Help, Uncategorized, Whistleblowing, , ,

How Will MyNotes Medical work for you? Watch our walk-through slides

We have had a fantastic response regarding MyNotes Medical, but people are still unsure how MyNotes Medical works.

Here is a short slide presentation walkthrough how the programme will work. We NEED your support to help us to help you. Please pledge your support on our link http://goo.gl/3rf9c7  Thank you, Together We Can Make A Difference Joanna 

 

Filed under: A&E, Cancer, Care Homes, Dementia, Disabilities, Elderly, GP's, Hospital, Mental Health, Named & Shamed, NHS, NHS Blunders, Self Help, Uncategorized, Whistleblowing, ,

“Our baby was a hero” – parents speak one year on from their baby´s death

For Jess Evans and Mike Houlston from Cardiff, the birth of twin boys Teddy and Noah on 22 April 2014 was one of both heartbreak and hope. Teddy was born with a rare yet fatal condition – anencephaly – but his parents were determined his short life would not be in vain. Once the diagnosis was confirmed during pregnancy, the parents discussed and wanted, if possible, for his organs to be donated. The family managed to spend precious time with him before he passed away and Teddy became the youngest organ donor in the UK. In the last 10 years, 39 babies younger than 2 years old have become organ donors helping to save the lives of strangers.

As his twin Noah celebrates his first birthday the family are using the anniversary to mark the occasion when his brother Teddy became a hero. His kidneys were transplanted to help save the life of another person.

Click on the link to read more

http://organdonation.nhs.uk/TeddysStory/index.asp

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Sign up to the NHS Organ Donor Register and tell your relatives that you want to donate. Visit the Registration form or call 0300 123 23 23.

Filed under: Self Help, Uncategorized,

Beating Bowel Cancer

Stephen Browne was 45 when he was diagnosed with bowel cancer – it was his wife that persuaded him to go to his doctor when he noticed symptoms.

Beating Bowel Cancer – Call our helpline on 020 8973 0011

https://www.beatingbowelcancer.org/

Filed under: Cancer, Self Help,

Why 60 is the new middle age: Our longer, healthier lives means we aren’t classed as elderly until at least 70

Retirement may be beckoning and your knees may be creaking. But if you are 60, you are merely middle-aged. Scientists say that as we live longer, we need to rethink what we classify as being old. They say that rather saying old age starts at a fixed age such as 60 or 65, we must factor in how much longer we have to live. They suggest that we don’t think of ourselves as being old until we are within 10 to 15 years of the average life expectancy for our countrymen and women.

The average life expectancy for women in the UK is 82.8 years, meaning British females needn’t consider themselves old until they are 72 or 73. Similarly, with male life expectancy at 79 years, men don’t become old until they are close to 70.  And if old age starts later, by definition, middle-age does too.

Click on the link to read more  (Now that’s good news)

http://www.dailymail.co.uk/health/article-3040338/Why-60-new-middle-age-longer-healthier-lives-means-aren-t-classed-elderly-70.html?ITO=1490&ns_mchannel=rss&ns_campaign=1490

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Filed under: Self Help, Uncategorized, ,

Hospital in Ashya King case reveals ‘outpouring of hatred’ directed at staff

Would you take your very ill child out of hospital against the doctor’s advice?

Please fill in our one question survey by clicking on the link

https://www.surveymonkey.com/r/Ashya

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Medics tell BBC documentary of overwhelming volume of vitriolic messages received – and defend their approach to the five-year-old’s treatment

Staff at the hospital where five-year-old Ashya King was treated for brain cancer before he was taken abroad by his parents have spoken about the “outpouring of hatred” they received – but said they would act in the same way if the situation arose again. Medical staff at Southampton general hospital told a BBC documentary how the torrent of abuse effectively shut down the hospital’s switchboard after it “became a story of a hospital [that] was chasing down a family”. One doctor said he received hate mail from someone telling him they wished his own children would get cancer and die.

The hospital came under the glare of the world’s media last August after Ashya’s parents took him abroad for treatment, against the advice of the NHS specialists who had been caring for him in Southampton.

Click on the link to read more

http://www.theguardian.com/uk-news/2015/apr/10/hospital-in-ashya-king-case-reveals-outpouring-of-hatred-directed-at-staff

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Ashya – The Untold Story will be broadcast on BBC1 at 7.30pm on Friday 10 April

Filed under: Cancer, Hospital, NHS, Self Help, Uncategorized, , ,

Mother is stunned to discover she has aggressive form of cancer after reading a Facebook post describing all her symptoms

A mother who spent months feeling unwell was horrified to discover she probably had cancer – after spotting all her symptoms on a Facebook post.

Laura Everley, 36, had experienced bloating, lower back pain and constipation over a three-month period. She also frequently needed to urinate. But having previously suffered irritable bowel syndrome and endometriosis, she put the symptoms down to those conditions. It was only when she stumbled across a post on her Facebook timeline, which detailed all the same symptoms, that she realised it could be cancer. Tests later revealed she had an aggressive ovarian tumour – and the disease had begun to spread.  After performing a hysterectomy to remove her womb as well as her ovaries, surgeons revealed the cancer had already begun to spread. Mrs Everley is now undergoing chemotherapy and doctors are confident she can beat the disease. She hopes her story will raise awareness to the symptoms of ovarian cancer, prompting other women to see their doctor if they are worried.

Warning signs of the disease can be difficult to recognise, particularly in the early stages.  This is because they are often the same as symptoms of other less serious conditions, such as irritable bowel syndrome (IBS) or pre-menstrual syndrome (PMS). Mrs Everley said: ‘The symptoms are the same, so I thought it could have been irritable bowel syndrome

Click on the link to read more and watch the video

http://www.dailymail.co.uk/health/article-3027386/Mother-stunned-discover-aggressive-form-cancer-reading-Facebook-post-describing-symptoms.html?ITO=1490&ns_mchannel=rss&ns_campaign=1490

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Laura Everley, 36

Filed under: Cancer, Self Help, , ,

Is it dementia or just normal ageing? New test will help doctors identify if you are at risk of memory problems

A new scoring test to determine who is most at risk of developing memory problems will help doctors spot the signs of dementia, scientists said today.

The new tool is aimed at dementia of the debilitating condition, which currently affects more than 47 million people across the world. By 2030, the World Health Organisation predicts that number will spiral to 75 million. But researchers at the Mayo Clinic in Minnesota hope their research will help identify those most at risk, to help doctors intervene with potentially preventative treatments.  Study author Ronald Petersen, from the Clinic’s Alzheimer’s Disease Research Centre, said: ‘Our goal is to identify people who are at the highest risk for dementia as early as possible.

‘Early detection of individuals at high risk of developing memory and thinking problems that we call mild cognitive impairment (MCI) is crucial because people with MCI are at a greater risk of developing dementia. ‘This allows for a wider window of opportunity to initiate preventative measures.’

Click on the link to read, and take the memory test

http://www.dailymail.co.uk/health/article-3001079/Is-dementia-just-normal-ageing-New-test-help-doctors-identify-risk-memory-problems.html?ITO=1490&ns_mchannel=rss&ns_campaign=1490

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While forgetting what you went upstairs for is and taking a few minutes to recall where you parked your car is no cause for concern, if you can’t remember your grandchild’s name but can recall childhood memories, you should visit your GP, experts say

 

 

Filed under: Dementia, Elderly, Self Help, Uncategorized, , ,

Dementia Documentry. Please watch Norman McNamara’s account on what its like to live with dementia

Diagnosed with Dementia aged just 50 yrs old, now 56 and still fighting it. Please watch his story and how he is helping others.

Filed under: Dementia, Self Help, Uncategorized,

Getting your message across

Dear Friends, there are lots of ways to get your message across and all for free.

Have you thought of writing a book on your story, your experiences?

Writing is very cathartic, it releases emotional tension especially after an overwhelming experience. You don’t need to pay for a publisher, as you can self publish for free. It’s very easy to do and there are tutorials to help you. 

I use Lulu.com  https://www.lulu.com/ Purchasing is on a one per print basis, so you can pay for one book or more. Once published, you automatically go onto Lulu’s web store so others can view and purchase your book. Or if you like you can keep it private, just for your eyes only. You get free template designs for your book cover, and templates to get you started. Once published Lulu also link you onto Amazon for free if you wish, to give you more exposure. You can also publish on Amazon kindle https://kdp.amazon.com, and I repeat it’s all free.

There are great tutorials on both sites, and you can also do some research on YouTube  https://www.youtube.com, a great free learning tool.

You can get your story published in the media. I used Talk to the Press and my mother’s story was published in the Mail on Sunday http://www.talktothepress.co.uk/

Do you have your own facebook page or group page? https://www.facebook.com/
Do you have a twitter account? https://twitter.com/

Do you have a blog? Go to wordpress https://wordpress.com/ to get started all for free.

I hope that the above has given you some ideas, and the only thing that it costs is time. Good luck, Joanna.

lotus-fl

Filed under: Self Help, , ,

Are you living with a silent hell?

I know people close to me like this. They look great on the outside, but inside they are living with a constant hell. Pain, Stress, Bereavement etc. People do not understand that by putting on some make up everything is OK. Well it’s not… Joanna

Are you living with a silent hell? Please comment on our private survey. Please click on the link   https://www.surveymonkey.com/s/hell

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Filed under: Self Help, Uncategorized, , , ,

Check Yourself, Don’t Wreck Yourself! Cancer Awareness Campaign Video

Heather Walters is a superstar! Whilst battling breast cancer she wanted to make as many people as possible aware of the importance of checking yourself for lumps and bumps. Rather than wait until chemo had finished she wading right on in there and started putting together the elements needed to create an awareness video! That’s where I came in handy! Heather’s friend Sam Harding had re-written the lyrics to Taylor Swift’s Shake It Off and she asked me to sing it, which I did with joy.
Then, with the help of The Unlimited Dance Company we created a dance flash mob style in Barnstaple High Street!
We’re hoping Miss Swift doesn’t mind us nicking her song…we did ask her ‘people’ but got no reply… but it’s for such an amazing cause that we hope she doesn’t mind too much! www.shimnixproductions.co.uk

Filed under: Cancer, Self Help, Uncategorized, ,

6 Things to Never Say to a Bereaved Parent – BY ANGELA MILLER

We never really know what the right words to say to a bereaved parent. I hope this will give you some guidance. Shared from Yolanda Turner who lost her son Sean aged 4 years old

If you’re a bereaved parent, you can probably count on at least five hands the number of phrases you wish people would never, ever say to you.  If only there was a way for the world to learn how to speak compassionately to the brokenhearted.  What many people believe is a comforting statement, most often is not.  It usually feels more like a slap in the face or a swift punch in the gut.  Or like an uncontrollable need to vomit.  Or all three at once.  There seems to be a large gap between intention and what’s actually being communicated to those of us who are hurting.

Click on the link to read

http://stillstandingmag.com/2014/01/6-things-never-say-bereaved-parent/

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Filed under: Self Help, Uncategorized, ,

How to cope with Grief and Loss

I came across this brilliant website on how to cope with Grief and Loss. Please share with others who you may feel it will help.

Our Mission

To create universal awareness and understanding of grief and provide a virtual community, without geographical boundaries, where individuals can connect, heal and memorialize their loved ones.

Our Vision

To create an environment where individuals can affirm that the emotions associated with grief are normal, and where they can feel safe to express their grief. To offer our users access to information about local community support services that can help them through bereavement and healing.

Please click on the link

http://healgrief.org/

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Filed under: Self Help, Uncategorized, , , ,

Most People Don’t Know How To Reach Someone With Alzheimer’s But This Angel Sure Does

Alzheimer’s is on of the most misunderstood diseases. However some Angels on earth like Naomi Feil strive to make people with Alzheimer’s feel happy. She is the founder of Validation Therapy and in this video shares a breakthrough moment of communication with Gladys Wilson, a woman who was diagnosed with Alzheimer’s in 2000 and is virtually non-verbal. To learn more about this therapy visit http://www.memorybridge.org.

Please click below to watch this amazing video

Filed under: Elderly, Self Help, Uncategorized, ,

Some thoughts on Anger

Please read this article emailed to me from Joy Fahey on Anger, and how we deal with it. Anger affects us all, eats us up, and then we cannot focus on what we want to achieve. This will be a help for you all.

Anger is such a deep felt emotion, the combination of frustration, feelings of rage, furry and indignation, which can leave us feeling helpless and hopeless or even determined to take action to make changes. Positive indignation can be righteous anger at something wrongful or unjust that can move people to do great things.

Reading Joanna’s blog and the many reports of failings in the NHS and the sad effects of that on actual lives lost or damaged had quite a profound effect on me. It takes courage to speak out and I have huge respect and admiration for the many people who are willing to stand up and be counted for what they believe is fundamentally wrong.
But my questions are ‘how do we deal with the actual pain of the injustice, how to we move forward with our own lives, pick ourselves up and start again?’
In any recovery the old adage of ‘time being the great healer’ is certainly true, we never forget but the pain eases and our thoughts change and we slowly adapt to the new circumstances. At some point we make a decision to either accept or let go.

Our human instinct for our own survival kicks in with fight or flight, we either try and forget or take up arms and fight back. Either way these are natural instincts, this is where it becomes interesting. Do we purely act from instinct or do we take control and wilfully take action? The circumstances force us to choose, we can’t go back we can only go forward but how?
The desperate quest for answers of ‘why’ can over shadow our whole lives, the injustice can eat away at us, so what is the answer? We can either get locked in this story and the past and in a way lose our own lives as a result, or we can let go and move forward.

After losing my own son, now many years ago, there seemed no way forward, I lived for many years in a desolate place inside feeling so many mixtures of emotions of guilt, anger, desperation, emptiness and the like, it made no sense. Why, why, why was a continual record playing over and over again.
A dear friend and subsequently a mentor encouraged me to start writing and then painting. These two creative activities opened me up to new possibilities especially my painting. I started to seriously study watercolour painting and got absorbed in art books and finding exhibitions I could attend. It led me back to life, it helped me look outside myself at nature’s beauty, it changed my thinking and gave me a new focus.
I wrote poems and started a journal, each day I would record my feelings, it released me to change my ‘why’ record and I started to see beyond why and began to see I could make my life valuable. Thirty five years later my life is dedicated to helping people, writing and painting and now I can thank my darling Nathaniel for the opportunity to be able to do this. Who would have thought that possible, certainly not me at the time.

Finding something you can focus on certainly helps to ease the pain and writing down your feelings is incredibly cathartic. It really does help to release pent up emotions, it gets them out of your head and it clears the path to see things differently. Your life is valuable, you can’t go back, and your past doesn’t equal your future. Aligning your thoughts on what you have to give can really help you as well as others move forward.

Joanna’s Blog is a testament to that, turning the anger into something positive, harnessing that energy to make a difference is a great example to all of us. Many Thanks Joanna

Filed under: Self Help, , ,

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