Pain relief conversation!

I doubt there are many people completely happy with their lives, as humans we are always striving for more, and always seem to lack something, not satisfied with life, convinced that we are the only ones that suffer and others have easier and better lifestyle. Fair enough, who is not guilty of thinking why me? Why can't I be like so and so that have everything? Why do some people have it all and I am the way that I am? Yes these are questions that invade our head at times but not many of us will voice them out loud and especially not to strangers or people we have just met. But then we are not professional nurses, who it seems have different ideas to us.

Two nurses went on their daily visit to a friend of mine whose health and ability got weaker over the last three years, to the extent she is at hospital almost 4 times a week, and GP has advised her to stay at home for they do not know when she will need urgent admission or district nurse visit. The problem started when the regular nurse brought a new nurse who will help them when and if they are short staffed, so she wanted to show her what my friend needs, as they started to make conversation to distract my friend from the procedure as it is very painful, the regular nurse asked my friend if she managed to go and see the Paralympics game and my friend replied yes, at that moment the new nurse commented 'you are so lucky, as are all disabled people' my friend laughed and did not comment assuming the woman was joking, I mean where is the lucky break in going to see an event that everyone had equal chances of seeing?? question that remained stuck inside my friend's head, but the new nurse did not stop there, and to make her lack of common sense shines further, she informed my friend that she has a relative who feels sorry for people with disability but she tells him no, don't pity them they have a better life than us, so many facilities, exemptions, special offers, and everything is catered for them'. My friend was speechless, just as I was when I heard about the incident. My friend could not stay quiet, so she asked the nurse to elaborate because what she just claimed bears nothing to reality which we live every day, then said look at me, I have been almost bed bound for the past 3 years do you still think I have a better life? The nurse did not give up and carried on her argument saying 'well the government looks after you'!!!!!!!!!!!!!!! You get free tickets for your carer!!!!!!!!!

My poor friend just gave up at the point, thinking I would have rather tolerated the pain of the procedure in its full glory rather than listen to the knowledgeable nurse!!

As I write the blog I am still stunned by the words of this nurse, evidently education does not mean common sense and professional titles does not ensure you have care, knowledge and compassion, how can any senior nurse goes to visit a sick  and weak person and tells them they have a better life than physically able people? How can she dismiss the person pain and suffering and all for what? A free ticket that would cost 40 pounds? I would love to ask that nurse for 40 pounds would you sacrifice your health, ability and freedom?? would you go to hospital almost daily, will you wait for carers to get you ready and then wait for someone to prepare food for you and that is not even addressing all the other issues, such as public transport, access to buildings and amenities and the fact that you are constantly judged on your appearance and ability!!!!  I do not blame people for thinking that but to actually say it to such vulnerable person and by an experienced profession is inexcusable. If we assume that she has never worked or encountered people with various impairments, has she never watched the news or watched TV or read newspapers? Does she not know that many court cases over the right to die are by people who are severally impaired? I wonder if she still thinks they are lucky. Maybe they are so lucky they want to escape this world so they don't get envied!  

As a child growing up in a mainstream school, I often had children saying oh not fair you are so lucky you don't have to do PE, oh why are you allowed to leave early? Wow you are so lucky you have your own bus to take you, why you don't line up for school dinner? Not fair!!!     Yes they were right, not fair, but they were children who judged things from visual facts without understanding the full story. They had no idea that no I wanted to wait in the line for school dinner, I did not want to leave early I wanted to go on the public bus with them, I did not want to be different, did not enjoy it and made me feel uncomfortable as it built a wall between me and other children, and even if it did not then it limited my interaction with them, you form special friendship walking home together, or leaving school at the same time etc. all these things I along with a lot of other disabled student were deprived from yet people saw us as lucky, and honestly I am to blame for that as I never corrected them for fear of being less, of seeming weaker and I was so desperate to be their equal!

But as I said these were children and this is a professional nurse, why enter a career that requires certain qualities such as care and compassion and show none of it?  Ironically people with impairment are usually judged on appearance so they are either dismissed or pitted in this instant they are envied for their lack of ability!  

No where To Run!

If we can not trust carers, nurses or doctors then surely a hospital that combines them all is likely to be the worst nightmare that any individual can experience. It would be fair to say that I am talking about certain group of individuals, such as the elderly, weak and disabled or people who do not speak perfect English who

would often go alone, making them a dismissive figures in the eye of health professions. I am sure few people will like to argue against my point but before you do, ask yourself do you go to your hospital appointments alone? are you impaired in anyway? what is your gender, nationality and occupation. I have observed this with my own eyes how people get treated differently in hospitals, even I have suffered from this but I found the best way to deal with this behaviour is to make it known that I am highly educated, I speak English and sadly I try not to be too nice, because when you are nice professionals do not take you seriously. 

I am not going to share my experience in this post and save it for future ones but I will narrate a recent incident that happened to a friend of mine who got admitted into hospital in the hope of curing a recurrent problem, what she did not expect that she was put in a private room, it is great  in a way as it guarantees peace and quiet but it also means that she will be left alone all day as nurses do not come to check on her, even when they are buzzed the nurses do not come instantly like  they are required to do, they either do not bother or go after an hour or less, by then my friend would either have given up or made to feel guilty for  they are busy and she buzzed them! 

The hospital stay lasted 5 days, seemed like 500 days, being neglected by nurses is one thing, but get given double the prescribed IV antibiotic is just sheer irresponsibility and negligence, when my friend noticed that she is being given two bags of IV she questioned the nurse, who assured her it is the correct dose that the doctor had prescribed and when the registrar doctor came my friend again voiced her concern but as usual was dismissed as CLEARLY DOCTORS know best! It was only when another doctor saw her on the last day of her stay that he confirmed the antibiotic was double the dose and wrong type!! By that stage my friend just wanted to escape home, the only place where she feels safe, and did not want to make an issue of the antibiotic incident, knowing that no one would take her seriously and health profession 'stick together' leaving her more vulnerable than ever as she will have to see them every week. But the most important thing is that she is escaping this...not sure what would be a right title, prison you would be watched, here she was not, confinement, basic care would have been given, it is almost a place that you expose yourself to shooters and attackers where you can't trust or rely on anyone. 

It always amazes me why it takes 4 hours for the hospital pharmacy to prepare the medication, considering as in inpatient they should have enough prepared but let us not be too critical the most important thing is getting the medicine and going home. leaving the hospital in a worse state than when she came in and being told by doctors that they lack the specified knowledge to treat her condition, my friend was still upbeat, if that is possible but the thought of getting home made everything else just seem trivial. Finally took the medicine that was put in a bag and off she went home, only to discover on arrival that she was given the wrong medicine!!!!!!!!!!!! Thank god my friend is educated, aware and does not live alone, can you imagine if an elderly had been given the wrong medicine they would have carried on taking it without realising the mistake!! After phoning the hospital my friend gets told to bring it back and take the correct one, already tired and frail my friend heads back to hospital where she is advised to come back tomorrow as her medicine won't be ready until then!!!

Hospitals are meant to cure people and if there is no cure then at least make them comfortable, help them to live with their condition and provide the care and attention that no other place would offer, not ignore, belittle dismiss and generally make your health and emotion in a worse condition than it was.

I want to complain and take this further but it is my friend's choice and as she pointed out to me, she is  a long term patient at that hospital, the minute she complains the worse the treatment she will receive, and ultimately it is her word against a handful of professions. I hope that reading this blog will make people more aware of what being admitted into hospitals entails, handing over your body to careless professions. 

Forgetting the Forgetful!

As much as I love my blog and enjoy writing, sometimes I wish I don't have the material to blog about, just when I get accustomed to certain flaws, which is wrong to do, something happens and makes me realise there are so many wrongs in this world that go unnoticed or ignored.

The latest story  is about 74 years old Lady who suffers from dementia, lives alone but gets daily care by a care agency. This lady has the same carer that goes to her everyday except Saturday, and so on that day the agency forgets to send a cover or a replacement and the elderly lady stays alone in the house looking for something to eat, does not know how to bath or toilet herself and of course does not take the medication she is on.

The regular carer complains and voices her concern but the office apologise and after all we are all humans and commit mistakes and forgetful!!! But this is repeated almost every week so human error is actually not an error but negligence and lack of care.

Imagine the vulnerability of the woman, or the fact that she goes for a whole day without food or medication, if people can place themselves in her or in the position of all the cases I have written about only then will better care service be provided. People who make laws, regulations, control health and social care need to imagine being that person in need of the service or think that it could be them in need of help only then the treatment that will be on offer will be of a high class.

Streets or world apart?

Two days ago there was a report in my local newspaper about how a child had outgrown his wheelchair and his parents could not afford the 18 thousand wheelchair he needed so his community raised the money and and the little boy was able to go out again. Such a tale gives hope and a warming feeling inside each one of us regardless of our ability, we all could be that little boy or his parents. It is a fact that every person blocks out or dismiss but eventually all will need to be cared or looked after if not for life then for a brief period, no one is exempt from getting old, ill, or in need of help but we all forget that we are just vulnerable humans, the strength and ability one has could be lost in a second, this is something that people need to always remember.

Ironically in the same area but different street a friend of mine, an adult I may add, had her wheelchair stolen from the front door of her house, by a local teenager well known to the neighbours and police for that matter, luckily the wheelchair was eventually found but at what cost? and what are the consequences?

The boy is a minor so although he does this often he can't be imprisoned and if my friend presses charges what will he get at most warning and where will that leave her? she could make an enemy of him, increasing the likelihood of another attack. Even the police did not entertain the idea and offered an alternative option, to bring the boy to my friend's house to apologise on the ground that 'if they see the state that my friend is in the boy will think twice before he attempt such a thing' What a nonsense! The boy must have known my friend because they live on the same street, he must have seen her return from hospital park her wheelchair then took it, he must have also seen the state of the wheelchair, a very worn out old type of wheelchair, if all of these facts did not stop him in the first place why would seeing her at home make him guilty or remorseful?

Unfortunately my friend has no choice, she is happy that her wheelchair is back and does not want any further troubles and desperate to forget the whole ordeal, to be mugged is a bad enough concept, the idea of a stranger taking something precious of yours and you are not strong enough to stop them is self destroying but to have what could be best described as your 'legs' or your 'pass' into the active word, taken off you from within your safety net is a situation that is horrendous beyond words. How can one feel safe again? and how do you trust your community?

Many people will not realise the importance and connection a person has with its wheelchair, it is more than wheels that allows you to move or participate in the outside world, it is your key to freedom, your companion, your legs,an important aspect of  life that has a special bond which is hard to break, it is almost like part of your body and to have it stolen or broken makes the person feel more vulnerable and weak than anyone can envisage.

I end the blog none the wiser, how can the same area experience two contrasting situation, how at a time of economical recession people manage to donate a wheelchair costing 18 thousand pounds to a young boy and at the same time a teenage boy steals an old worn out wheelchair from a young adult? Do I expect too much from the world?  does bad behaviour have to exist alongside good one? is this a fair balance? I honestly don't know, but I do believe if everyone thought for a second that this could be me one day then all our behaviours would be so different, if that young boy had imagined for a second he could be my friend would he have still stolen the wheelchair? if the police had imagined this is them or a member of their family would they have been happy and satisfied with an apology? As long as we lack empathy and compassion this injustice will carry on and continue to flourish.

Whose Fault is it anyway?

It has been a while since my last blog, not that my situation changed at all but unfortunately I got accustomed to the daily blunders of care professions, so I felt less inspired to blog about something I had accepted as part of life. But today I heard a story that made me so furious and angry that I decided to return to the one place I feel one day could make a difference, my blog.

Before I start narrating the story, let me just remind you of a song that popped into my head as soon as I heard this case, Phil Collins 'he ain't heavy he is my brother', its not the actual music I am interested in but the idea behind that line. The story begins with an old age pensioner in her mid 80s, lives alone and is a wheelchair user, due to her weight she has to be hoisted (over 14 stone approx). Yesterday at 7pm the carer went to get the lady ready for bed only to find the hoist has broken down, so she calls the emergency repair hotline and is told by the care agency to wait until the hoist is fixed. All perfectly reasonable so far, 3 hours later still no sign of the hoist engineer, every time the carer called the hotline number gets told they are coming. By 10:30pm the carer could no longer wait, which is understandable as she has to get home, see to her own family and prepare for the next day, so the carer covers the old lady with blanket and leaves her to spend the night sitting in her wheelchair without even going to the toilet!!!.

Can any of us imagine sleeping seated in a wheelchair without going to the toilet for more than 18 hours???? Well that is what this lady had to endure as the hoist engineer did not turn up, when the carer returned in the morning the hoist was still broken and it remained so until this afternoon. (I have not been updated at the time of my blogging) Whose to blame for the degrading and painful night that the vulnerable OAP had to endure? It is certainly the engineer for not coming to fix the hoist, but how can a human being's life depend on a machine??? if the woman had children living near they would have struggled to lift her, if we lived in a world that has a sense of community and compassion then the neighbours would have gone to help, if social care was in better shape than its current state then there would be a contingency plan,  a sort of back up that ensures the welfare of the old and vulnerable is never jeopardised. It is ironic that so much care is on offer but served with little care.

Phil Collins did not notice the weight of the person because he was a brother, 10 stone will seem like lifting an elephant if you are not related to the person or more accurately if there is no emotional involvement.

There are so many people, system and institutions to blame but all have one common ground lack of care and compassion.  

Little Voice

I have addressed the issue of being 'noticed' in previous blogs, so this entry will not reveal any new findings but will reinforce the point that I have been trying to highlight throughout my blogs, which is the absent nature of the patient's voice in any decision making.

Few weeks ago I was waiting for my usual visit from the district nurse, interestingly I don't get told who will be coming or what time, all I am given is the day, which I suppose is a blessing as it saves me from being at home all week waiting. I waited and waited but no one turned up then just before midday the phone rang but before I could answer it had gone into voicemail, and so I found a message from the nurse asking if I need him to come or not and I should call the district nurses office  and although there might not be anyone there, I should leave a message regardless or keep trying. I was slightly annoyed, as my elbow was in a very bad state and I had assumed the nurse who saw me last would have reported my current state back so the office, whom would ensure a nurse is sent to me without the need to ask me if I needed a visit or not.
I called the office, and ironically they know who I am instantly by my voice which they often take no notice off, so I spoke to the deputy head and explained what happened asking her to tell the nurse I actually need him to come as my wound is very bad. The response I got was so frustrating but extremely hilarious at the same time, as I was told "the nurse is on the way, you can discuss the matter with him when he arrives" so in a state of disbelief I replied !!hmmmm but that is the point he won't come unless you pass on my message', for some reason my words did not seem to register for I got the same response, "he is on the way discuss whatever you like with him". I pointed out again that he can't be on his way for he just left a message with a clear intention of not coming unless I require it. But the same stubborn answer persisted and we went on like this for a good 3 or 4 minutes, repeating the same thing, which I will save you the details to avoid the risk of high blood pressure and extreme frustration, suddenly there was a slight hope as the woman clearly bored by my persistence told me to hold on!!! Progress well, everyone is allowed to dream.  For a mere flying minute I thought I had finally made the woman understand, after telling me to wait, she asks another person in the office where is that particular nurse, only to be told he is on his way to me and the woman returns back to the phone and in a triumphant voice tell me, He is on his way to you!!!
It did not matter what I said or what facts I gave them, in their eyes they know best. I gave up in trying to convince the woman, all I wanted her to do was just phone the nurse and tell him that I do need a visit but all she was concerned about is being right and dismissing my voice. I did not have the patience to make her see her mistake all I was concerned about is getting my dressing changed, wound looked at and for the nurse to come. I took matters into my own hand, recalled the last number that called my phone and although I would never dial a mobile number that was not given to me, but situations force us to go against our beliefs and principle, and when people fail to give you respect and courtesy then you fail to treat them like you would treat others. So I called the nurse on his mobile,not recognising my number he replied and was slightly surprised to hear my voice but when I told him that my wound is in a bad state he agreed to come after he sees two other patients!!! so much for him being on the way to me, when in actual fact he had no intention of coming had I not phoned!!

Despite all this hassle and frustration, there was a happy ending in some sort of manner, as I did reach the nurse and he did come and changed my dressing. Not everyone is as lucky, there are so many old and vulnerable patient who would have accepted their fate and not tried to pursue the nurse, they would have listened to the office and spent their entire day waiting for the nurse who 'is on his way' and ended up staying in their soaked dressing! How can such careless people be in charge of people's lives? why does a patient who may be suffering health issue lose credibility and dignity with it too? I end this blog with a question that unfortunately I see its answer everyday 'does physical strength determine the way others treat you'?

New Year, Old Pain!

It has been an exact month since my last blog. I waited in the hope that I could start the new year with something positive to blog about, I wanted to write how the elbow wound began to heal, that the GP admitted his mistake in sending the 'Vitamin D' letter, that the nurses started to come more regularly and spent more time cleaning the wound but I waited two weeks into the new year with no sign of improvement.

There are few incidents to write about but I guess one must forget the past, well unless it affects the future, so the  'Vitamin D' letter which was sent to me by mistake, does not affect the recovery of my elbow wound and once I confronted the GP he was very embarrassed and dismissive of the matter, he did not apologise but took the letter and said he will deal with it. As frustrating and slightly distressing the whole ordeal was but it does not have large impact on my health, so I was more than happy to forget the matter and accept it as just human error, and doctors and care professions are essentially humans.

I spent the last day of 2011 in agony with the wound at it worst, the nurse came to change the dressing and as she took it off, shouted Oh my God!! admitting that she has never seen it this bad, then told me we will only came twice a week!!!! cutting my visits down from three! I tried to voice my concern but got told that my wound probably got bad because it keeps getting looked at and changed! The wound is leaking, full of puss and bleeding yet the nurse thought it is better to leave it in that state then see it as regularly as before. I was in so much pain I called the GP who thought it is better to have a look at it, so I went and waited to be seen for more than an hour but that is not a major problem, at least I got seen on the same day so one must be grateful. The GP took a swab of the wound then prescribed pain killers which could affect the respiratory function, this is despite me informing the doctor of me being on ventilator and suffer from breathing problems.

A week or so later I phoned for the swab result, the receptionist informed me that the swab came back on the same day and was clear, anyone who had swab or blood taken knows that it takes at least five days to get the result, so how can the swab came back on the same day? and it was not any ordinary day but Friday 30th of December! when everything was semi closed, and more importantly the swab was taken after 5pm so even if it were to come back on the same day (which is pure fantasy, as it would not even happen in TV drama/films) it would have returned at 7 or 8pm and the GP surgery was closing early due to the festive season! I explained all this to the receptionist and was given the same classical reply, "But that is what it says on my computer screen"! It is as though this computer screen is the God of everything, the ultimate decider the figure that no one can argue or question!

Is it not the same computer that printed the 'Vitamin D' letter? was it not the same computer that 'documented' I had my scan before I even had taken the request form? so why when mistakes are made by humans, computers get the blame, yet when patients who are also humans voice their concern they get defeated by 'the Computer' are we the patients and people in need of care less of humans than care professionals? they are above the law of the computers yet we have no voice against a static gadget!

You know you are doomed when a mute computer has more power and say over your own health, and over rules any valid arguments you have.