Sentimental Sunday - Polio and the Journey Ahead

Image courtesy of
 www.virology.ws

Back in 1953, so 60 years ago, my Mum then aged four and a half contracted Polio. All through my childhood I was aware of the impact that the disease had, had on Mum, although she never used a calliper or a stick.

Fast forward to 1997 and Mum was diagnosed with Post Polio Syndrome, a condition which affects those who suffered from Polio back in the 1950's. There is no cure and year on year I see Mum battling to remain independent and strong. Mum is Fiercely independent and stubborn.

As I type this Mum is in hospital, and has been for about 5 days. She looks vulnerable and older than her years. The NHS here in the United Kingdom, envied across parts of the globe is feeling the pinch in the global recession. Wards, with 20 or so patients looked after by a team of six, three nurse and three auxiliary nurses. I am frustrated beyond belief with the care Mum is receiving, almost as much as Mum is frustrated because her body can not do what her brain believes it can.

The situation is woeful and I could seriously sit down and weep. How do people with no family, much less those who do not spot the medical issues because those family members are not equipped to spot such things deal with the inefficiency or concerns?

Through the whole of my professional career, I have cared for the patient in front of me, as if they were my relative. That I learned as a newly qualified professional and I always stuck to that belief and passed it along to newly qualified or trainees working alongside me. 

I recall in my post qualified days those who worked within the hospital sector sneering at those who had opted for the retail sector, as if we were a poor relative. I did my stint in the hospital sector too, both within the NHS and private, within the Prison Service medical teams and industrial settings. I always returned to retail settings because of the interaction with the patients and health professionals, but one thing that has always been consistent  across all those different settings is the frustration I feel when the organisation puts profit or money before people, patients and their needs. 

The road ahead for Mum is going to be rocky, frustrating and I suspect a battle. As I told the staff today."I have one Mum, and she is in your care. She is a patient not a piece on a chess board. Please treat her with dignity and respect" I wish I could say that this is a one off, but sadly no, the same applied to yesterday too.

By coincidence, Sky News ran an article yesterday about the NHS virtually grinding to a halt because some departments and staff do not work weekend. Excuse me? My personal views are this. The NHS is run by the department of Health and funded from the Government by the taxes and insurances that are paid by those who work and/or pay such taxes. 

The NHS is a multi tiered organisation. Each of those levels has a management structure that is perhaps too manager heavy. With each level of manager, those who have a professional qualification - nurse or medical background, are removed from the ground level objectives, which is fundamentally the patients. As policy and bureaucracy are introduced, so is a new manager level, so as to cope with the endless spreadsheets, policies and alike.

As I looked around the ward today at the staff the average age was probably 30, which is half of the time that Mum had Polio. In fact when I was talking to one of auxiliaries, she told me that she thought polio had been eradicated and what was post polio syndrome?   Through no fault of their own there is a generation or two that has no idea of the legacy Polio has left behind. These are though the health professionals of the future.

World Polio Day - 24th October 2011

Remember those Polio drops that the school nurse popped onto your tongue? Well I do, and for me they worked. Since those days I have visited areas that you can still contract Polio, so I paid up and had the relevant vaccinations and took all reasonable precautions. The vaccine probably hurt, but only for a short time. 

For future generations we must, must prevent Polio from being allowed to destroy the lives of future generations. These generations are in the main, living in the Third World, where vaccination against Polio is not routine and where there is limited knowledge of dealing with outbreaks.

In the Western World, Polio has in the main been eradicated. 

Polio is a infectious disease caused by three polioviruses. It is spread by person to person contact via the nose, mouth or infected faeces. After the initial contact the virus is shed intermittently in faeces and is then unknowingly spread through communities.

Upon entering the body the virus multiplies in the throat and intestines. It then heads to the Central Nervous System, where it can destroy or damage the nerve cells that control muscle movement. Sadly, this can lead to muscle paralysis of any part of the body and even in some cases death.

The majority of people develop flu like symptoms and in some cases those infected do not even realise that they have polio. For some it will get into the Central Nervous System and will cause inflammation around the brain, spinal cord, and brain tissue. This is known as Non-Paralytic Polio.

Polio can invade the motor neurons causing weakness, paralysis, muscle cramps and pain. This is known as Paralytic Polio. Sometimes Polio affects the brain stem causing problems with breathing and swallowing, cardiovascular problems and facial problems. This is called Bulbar Polio.

Those who contracted Polio may be left with varying degrees of weakness, paralysis, fatigue and muscle pain. Some have breathing or Orthopaedic problems. Some have made what looks on the face of it a full recovery and sadly some never recover. It is estimated that there are around 120,000 people who have had polio.

Regardless of geography, Polio has set the wheels in motion for a further event. 

Post Polio Syndrome.

Post Polio Syndrome is a neurological condition suffered by those some 30 or 40 years after the initial diagnosis of Polio. 

After being stable or without any effects for many years, muscle weakness further develops in muscles not previously affected, there is increased or new fatigue,  muscle and joint pain. Post Polio usually being slowly, although there can be rapid onset following a trigger action, such as falls or surgery. 

Post Polio occurs regardless of age or Non-Paralytic or Paralytic Polio. As each symptom develops then this must be managed appropriately. 

There is no cure for Post Polio Syndrome.

So, now knowing what can happen once Polio is contracted, we need to be drawing together to eradicate such a disease. We can not stand by and do nothing. Please sign the Petition

Thankfully, I have never had Polio. My Mum was not so lucky, She contracted polio in 1952 aged 5. She received a diagnosis of Post Polio Syndrome in 1996.

Help to eradicate Polio now.

Further Links

The British Polio Fellowship 

British Polio Heritage Project

Rotary International in Great Britain & Ireland (use hashtag #rotaryendpolio) or via Facebook

Disclaimer - The information provided here should not be taken as medical advice.

Blogging Against Disablism Day - 1st May 2011

1st May 2011

It is rare that on this blog that I talk about the day job, simply because this little bit of blog ville is my way of escaping. It is though quite common that I discuss the frustrations of the day job with my nearest and dearest and colleagues.

Here is one of those frustrations. Somehow, somewhere along the professional line, the health service, including pharmacy services, paid for out of the coffers of the Department of Health has stopped us from being 100% health professionals to a downward slide of health professionals and accountants. 

During the course of my professional career, I have been involved within the service of medications being blistered packed for those who require it. The pharmacy contract agrees a certain payment for items dispensed and in doing so and delivering or supplying weekly in return for weekly prescriptions from Doctors. Then, just recently, some Doctors have been issuing monthly prescriptions, which means supply needs to be made monthly. This might not be appropriate. When I challenged the case, I was given every excuse under the sun with the exception of the honest one, which is cost. As a professionals within our field we have to ensure patient safety, and this should not be cost driven.

Furthermore, not all patients that have their medication dispensed this way do so because of a disability. In some cases, it may be a memory issue, or compliance issue. In other cases it may be a reassurance factor for relatives. The bottom line is this. Regardless, we should treat patients and fellow humans as we would want ourselves to be treated or our parents. The issues of cost should not enter into the equation. 

So, that rant over.

I wrote about my Mum's link to Polio and the last effects of that disease for the One Month before Heartbreak Challenge back in February. I seriously thought that Mum would have been refused the DLA and that a verbal and paper battle would ensue, but that was not the case as Mum heard that she had been awarded the DLA. Victory, but for how long?

When I first saw the link regarding Blogging against Disablism via Twitter from @PostPolioNews I knew that I wanted in some way to take part. I shared the web posts with my Mum and we chatted about her fears for the future. Mum is fiercely independent and often refuses lifts and help on the basis that one day she will be incapable to doing those things, rather than simply accepting an offer of help from a caring daughter. Nonetheless, no matter how much Mum's stubbornness frustrates me I must respect her rights and wishes.

I don't class my Mum as disabled. She walks with a limp and has a long way to go hopefully before confined to a wheelchair. She has always limped and recently I was telling a colleague of Post Polio Syndrome, which is what my Mum has when I was asked which leg was affected. You do know, I could not remember. I felt dreadful initially, then the realism hit, that actually that limp is as much a part of Mum as her lungs or hair, and to me, Mum has this condition, but Mum is not the condition.

Disclaimer. The post above is written based upon known family history and my personal opinion. It is not written as a political post. I am happy for this post to be freely shared, however, please acknowledged me as the author.

One Month before Heartbreak - a personal note

One Month Before Heartbreak

A Broken of Britain

Blogswarm

14^th – 16^th January 2011

I am not personally affected by the proposed and likely to take place changes that the current Government are looking to adopt. The point of this post and like many others is to express absolute disbelief that we live in a Society where we are prepared to give thousands to other Countries in the world despite being in a recession and yet not provide safety and financial security for those entitled to claim it and those who need it. It truly begs belief. Please understand, I am not against helping other nations, it is quite right that we as a nation help others in a worse situation than ours, but not at the cost of ourselves.

My interest in this is that in 1952 my mother contracted Polio. From the age of 5 until she was 17 she attended hospital for various tests and check ups to establish how her muscles were affected by this disease. When my mother left school she established her working life and eventually had me and raised me.

When she was about in her early 50s Mum was plagued by periods of exhaustion and pain to name a few. Her GP signed her off work and after much form filling Mum eventually saw a Doctor who confirmed that Mum was entitled to claim incapacity benefit. After a period of time this was reviewed and Mum was advised that she was fit to work, although clearly she was not. I launched an appeal to the panel, which consisted of a lay person, a representative from the Benefit Agency and a Doctor. The Doctor at the panel agreed with my argument and stated that Post Polio Syndrome which my Mum has will get worse and not better and the Incapacity Benefit was reinstated.

Mum turned 60 and was advised that she should now claim Disability Living Allowance due to her increasing mobility issues. The Post Polio Syndrome is of course, as predicted getting worse. The form which no doubt many of you have seen is nearly 50 pages long and comprises of a set of questions, many repeated so that you might make yourself illegible for the benefit. Having completed the form two or three times and each time being refused. I consulted a local "volunteer expert" who assisted Mum and I with the form. The deadline was before Christmas and the form has been acknowledged and finally a report from the "medical expert" has been requested. By medical expert they have asked the physiotherapist for their views. No request has been made to the GP or to an expert in the field of Post Polio Syndrome. I did include some details about Post Polio along with the form.

My concern is this. The decision to allow or disallow is made on the basis that an expert has been asked. It of course does need to be the right expert in order for the decision made to be a robust and the right one. At the end of the day everyone seeking to claim or retain their allowance is an individual, each with an individual set of issues and concerns. Is it right that someone at 63, who was looking forward to retirement has a poor quality of life? Is any of the conditions that are being experienced right? Of course they are not, and as a society we have the power to give a little bit of help in order that it makes the life of that individual easier. We should not be making lives harder, so that exhaustion of living day to day is placed on top of the exhaustion felt by the conditions itself.

I have read somewhere that the Government believes that the amounts paid out in DLA is unsustainable. This benefit is in fact one of the hardest to claim. Given that it is so hard to actually be awarded the benefit, does the Government really believe that by removing the benefit will miraculously cure all those who currently claim and those who should be claiming but are not strong enough to plough through the red tape? If they do then the Government is not only deluded but seriously mistaken.

In 1942 the British Government asked Sir William Beveridge to write a report on the best ways to help people on low incomes. In December of the same year the Beveridge report was published and proposed that all people of working age should pay a weekly contribution. In return, benefits would be paid to people who were sick, unemployed, retired or widowed. Beveridge argued that this system would provide a minimum standard of living "below which no one should be allowed to fall". When the Labour Party were elected in 1945 this policy was adopted. Somewhere since 1942 we have gone wrong. The current proposal confirms just that.

I don't know what the answer is. What I do know, is that we need to find away to protect those who for whatever reason are not able to fight this battle alone.

Disclaimer. The post above is written based upon known family history and my personal opinion. It is not written as a political post. I am happy for this post to be freely shared, however, please acknowledged me as the author.