The NHS Long Term Plan

27a7dfa2e591a2dd35d0bc33194ad50b

No one can have missed the news recently about the NHS Long Term Plan for NHS England. Even those of us not living in England can’t miss it!!! I know I live in Scotland so it does not impact me directly but I am pretty sure the Scottish Government will take on a lot of the plans for the Scottish Health Service that are talked about in the NHS Long Term Plan.

The biggest thing that I have noticed in the news, on social media from news agencies is surrounding smoking and the help that is going to be given to people who smoke that are admitted to hospital. Any time I see anything about the plan this is what I see and it just angers me so much. I know I am not alone either as have spoken to many people who are in a similar position to me with their lungs that are frustrated and angry about it to. For me what it me most was that along with the national news agencies and NHS health boards tweeting about it, my own local health board posted (once again) about how they were going to give smoking cessation help and advice to patients admitted to hospital.

img_6761

I know this is a very good step etc and that people who smoke should be offered help to stop however on a daily basis just to get into work I run a gauntlet to try and avoid breathing in any smoke. The NHS made a huge deal about how their sites were to be no smoking sites and that smoking is banned on their sites yet nothing is done to enforce this. They have signs everywhere yet those who smoke just stand by them and light up. Some don’t even wait till they clear the door before they light up. This is not unique to me and the hospital I work in. I regularly see on different forums asthmatics saying they had to go to hospital but just trying to get into the hospital left them in a worse off state than they were when they arrived in the car park etc because of all the smokers they had to pass.

Until you have put up the fight of your life just to get a breath in you cant understand what it is like. It is one thing when you may have been a bit silly and done something stupid which provokes an asthma attack but when you have done nothing other than try and get into work and you end up in intensive care it can leave you feeling really angry and bitter.

What I would love to see and so many would love to see is the smoking ban being enforced or at least a shelter to provide those who smoke a place to go and then leave areas such as the main doors to the hospital as a safe zone. Also when there are the groups of people congregating outside the doors of the hospital- many of whom are patients why are the smoking cessation nurses not down there encouraging them to not smoke or at least smoke in an area which won’t risk killing people.

What is worse is that the main doors to the hospital I work in which are always flanked by people smoking, are over looked by 3 of the four bedded bays in the respiratory ward so during sweltering summer days you cant have the window open because you end up with a room full of seconds hand smoke.

I am not alone in how I feel and what I think which is why I am writing this. I am at a total loss as to what to do because everywhere I try and get the issue addressed cant give me any answers. Is it going to take someone dying from an asthma attack as a direct consequence of people smoking outside hospital doors for action to be taken?? I have got in touch with ASH, Unison, local MP none of whom could give me an answer or willing to take action.

My working hours are 9am to 3:15pm, I have a blue badge due to the severity of my asthma so can park close to the hospital however I have had to start arriving earlier and earlier so I can have the time to wait till the doors are clear of people smoking and then take my chance. This time is different each day but it shouldn’t need to be done. There is then the reverse when it comes to leaving work however I tend to end up just trying to get out and get to my car, once in the safety of my car I can have some nebulisers to alleviate the effects the smoke has had on my lungs. I just wish those who smoke understood what they were doing to others.

It is so hard to see so many struggle. I have read how people feel like turning back and missing their hospital clinic appointments because of people smoking at the doors and the risk this poses to their health. This should never be a choice that someone has to make.

It would be great if others could share this and try and get change to happen.

If the NHS are committed to help people stop smoking, then they need to be down there with those who are smoking not up in offices making plans. Smoke is not just effecting those smoking but also others around them and not only those with lung disease either.

Please lets try and get things changed. I don’t want to risk losing my job (which could be a real possibility) because I have once again ended up in the intensive care unit as a result of people smoking where they should not be smoking.

#stopsmokingonNHSsites

NHS Research Scotland Away day!

Gosh! Im getting used to being the only patient speaking at research events!!!

IMG_3754

Today NHS Research Scotland (NRS) held an away day in Edinburgh with a variety of researchers, research managers, R&D, members of the CSO and various others. There was also me- not a researcher, research manager or in any of the other positions that other attendees held. I was there as a patient and to give my perspective of patient and public involvement (PPI) and how it has impacted me.

As I present more and more and to larger audiences I find I am more at ease speaking at the lectern in front of a room full of people. What I have realised is that I can articulate the importance of PPI and how passionate I am about it. My passion for PPI comes from the experience I have had being involved in research and how it has changed my life. Not wanting to overuse a statement but it is I guess my catchphrase to sum up how I feel about PPI…

“the best thing is being able to share what I have been able to do in research and help researchers understand what it is like to live with uncontrolled asthma…PPI and research has really turned a negative situation into a positive one”

I feel so fortunate to be able to speak about the variety of different opportunities I have had as a result of PPI. Every piece of research is different so PPI activities that go with the research are going to be different but the aim is the same. It is about helping the researchers to get the most out of their research and making it applicable to people with that condition.

Not all researchers are receptive to the idea of PPI and working alongside patients as colleagues, but as PPI becomes more of an integral part of research and grant applications it is horrible to think that researchers who don’t like PPI are forced into doing it and then do PPI badly and this gives a really negative experience for the patients involved. As I have more experience now I feel confident in saying to researchers if it has been a bad experience but when I first started I didnt have that confidence and I don’t know what the researchers thought afterwards and would hate to think they went on as they did and give other patients a similar experience which is why I will now say if its not been good.

Speaking at events I can get across the importance of PPI to not only researchers but also to the patients involved and how it can give us hope that there is people who care about our conditions and are trying to improve our lives.

I started off in PPI not really knowing what I was doing and if the comments I was making were correct or not but as I do more I gain new skills and my understanding of PPI is greater. I love being able to share my passion for it and hope that by expressing my passion and how it has affected me will inspire researchers to go out and plan PPI events and incorporate PPI into their research.

Today at the NRS Away day I really hope everyone got something out of what I said. It was lovely to hear all the positive comments and the thank yous that people gave me is lovely to hear.

I want to open up and if anyone is reading this post who wants to find out more about PPI or how to get involved please leave me a comment as I am more than happy to answer questions and point you in the right direction.

Any questions just ask!!!!

wPjSOn03TpKQrQjylSEVHA

Snow week: lessons learnt

This past week the UK has been hit with some awful weather. In the whole scheme of things around the world the weather was not too bad compared to the likes of Canada but the snow fall was enough to bring the transport system to its knees, shops ran out of food, no milk could be found anywhere. The entire country was suffering. Mainly the suffering came because as a country we are ill equipped to deal with any snow other than a light dusting.

Schools were shut, offices were shut as well, public transport couldn’t run. If you had any vehicle other than a 4×4 you would struggle to make even the shortest of journeys. The news bulletins spoke about the red warning where only essential travel should be done and if possible everyone should stay at home. This is all very well if you have an office job, or work in a shop. When you work in an essential service like the police, fire service, ambulance service or in the hospital there is no snow day for you. Health doesn’t get better or standstill and wait for the weather to get better so people can get into work and get their job done.

As I work as a nurse we don’t automatically get to stay home because the hospital never shuts, healthcare continues. I was fortunate that I have a 4×4 so I could move around the city with relative ease however I heard fo colleagues taking 3 hours to get to work as they had to walk the 8km to get in while dealing with blizzard conditions. I could only commend those who put such effort in. I could do my bit and take the night shift from the renal ward home and pick up some people who were stranded on their way to the hospital. It was a great sense of team work and really what the NHS is about. As I walked through the ward there were Dr’s taking beds helping with washes, consultants taking bloods and everyone just mucking in to help. Some nurses were staying in the hospital over night to ensure they could work the next day. I have utmost respect for those who did that.

For me my role in the snow was returning to a role I loved. In our department we have a certain number of patients we have to see everyday and set their dialysis machines up at home. Since my breathing has got worse I have been hospital based and not been able to visit patients at home but for 2 days last week we had to use my car to get to patients as the pool cars which are Vauxhall Corsa’s didnt stand a chance in the snow, so for me to drive and allow the nurses to get the machines set up was a no brainer. I was able to pop in and say Hi to some of the patients who I haven’t seen in ages which was really nice.

I have mixed feelings now about the snow melting. When it was really snowy my asthma was a little better as the air felt so much clearer and fresh. That damp feeling had gone but as the weather improves the damp feeling has returned and breathing is not as great.  I m also glad that the snow is melting because I was having to do a lot more hours than I had previously been doing. I was essentially working 8-4/5 rather than 9-3:15. At the time I didnt feel like it was  a struggle however this weekend has been a right off. I have felt exhausted. My chest has been bothering me. I haven’t been able to sleep because of my chest and I really do think it is a mix of doing a lot more at work and the change in weather. I need to remember this feeling and ensure I don’t forget why I am only working shorter hours than I had previously. Part of me always wondered if I would be able to work longer hours but this has confirmed that I really cant. I wouldn’t change what I did at all but it is something to take note of.

Leaving from work on Friday late afternoon nearly caused me a huge problem and I was so thankful that I have a portable nebuliser which I could use. I do go on about smoking and the effects of people smoking has on my chest but the snow days have been even worse and made it very dangerous for me essentially leaving me questioning why I continue to try and keep working when just getting into or leaving work can pose such a risk (but that is for another post).

Fingers crossed this week everything will return to normal, public transport will be back up and running and the snow will melt away without causing huge floods around the city and country.

Happy Birthday NHS

Today 69 years ago the NHS was created. A vision of the government and Clement Attlee which would provide a unified health service available to all. The campaign and implementation was spearheaded by Nye Bevan who can be quoted saying:

c0690497475ba8590c5e7c32989ebd2c

I really do owe everything to the NHS and it is scary to see how the Conservative party are really making some difficult choices and actions which are really putting stress on the NHS which is a health service already on its knees.

It is a huge compliment to Scotland whose health service is by no means perfect but reading tweets this morning which said the Scottish system should be the road map for the health service in England, with that being said in newspapers headlines were slating the Scottish health services and hospital due to the number of beds being blocks and operations being cancelled. Its tough to see as I am both a service user of the NHS and employed by the NHS. I have also had experience of the NHS in England and there are huge differences which could be down to those who run the systems- the Scottish Government and British Government.

As an employee of the NHS I must say it is a fantastic organisation to work for. I have been very fortunate in my treatment by the NHS, I have a pension with them, receive a wage and have the support of colleagues but it is so hard to sit back and watch as wards are under staffed with not enough nurses, drs, domestics, care assistants and everyone is run off their feet all the time trying to cater for the needs of everyone else but not able to take the time out they need. NHS nurses have been subject to a 1% pay cap (along with other professions) which has crippled a lot of nurses who have families, mortgages and just trying to cover their bills. The 1% cap being lifted would make a huge difference because it would not only makes nurses lives more comfortable but it would be their effort recognised and help them feel valued in what they are doing.

As a user of the NHS and dependent on the NHS I really value them. I have gone from growing up in Scotland where because I was in school and under 18 I got free prescriptions so didnt need to rely on anyone for my medications and inhalers. I was guaranteed to get them no matter what. I then went to living in England being self sufficient and having to budget to include my growing medication list. At the time the cost of a prescription was £7.20 per item. It has gone up a huge amount now but this was about 10 years ago. I was on a huge number of medications and often needed multiple prescriptions of certain medications. It became a budgeting nightmare. I was fortunate that I was able to buy a pre-payment certificate so for £110 every year I was able to get all my prescriptions covered with it. Now living in Scotland prescription charges were scrapped which for me has been a real benefit as I have so many medications and currently have 32 regular items on my repeat prescription which is the medication I need every day. While free prescriptions for me are great I can imagine them being abused for some people who will go to the GP for something and get a prescription rather than spending the money themselves. A number of medications which people get on prescription could be things which can be bought over the counter but because they are free on script they go for that option putting more stress on the GP system.

I have also had some outstanding care from a variety of medical professionals. All hospitals across the UK have been great. The care I can’t fault especially when I was in hospital in Winchester and having my consultant from Southampton driving up after he finished work to review me as we were struggling to get control of my asthma. It is things like this that stick in your head and you won’t ever forget. Its also nursing care too. I can remember being in the resp ward Shawford Ward after coming out of ICU but finding it hard to breathe but being too terrified to go back to intensive care, but a nurse from ICU came to sit with me and go through why I didnt want to go back and reassured me it would be ok. She didnt have to do that but she did and it made a difference. It too sticks in my mind and when looking at the prospect of going to ICU I do think about that time. Not all hospital experiences are good and there are times when you do have bad nursing or bad medical care but its going to happen when services are stretched to the point of breaking.

It is scary to think that we really could be facing a time without the NHS. Im not sure how I would survive without them. They have been there to pick up the pieces when my asthma has kicked off. Looking at some numbers a night in ICU costs £2000 approx. I spent 4 nights earlier this year. I wouldn’t be able to afford that if the NHS is privatised. £500 approx for a night stay in hospital. I was in hospital for 3 weeks earlier this year. I would need over 1/2 a years salary to cover my hospital stays not including the added extras like x rays, bloods, IVs, drugs, food to name but a few.

I owe my life to the NHS as do so many other people but with so many people abusing the NHS and going to hospital for a sore tummy or headache, or cut finger when not needed is crippling the service. As a nurse I can’t say to people why did you bother going to the hospital because this could have been dealt with at home, we have to smile and provide the care we would give to other patients and hope their Dr will discharge them when required so the bed can be opened up for someone who really needs it. I often question going into hospital and calling an ambulance. If I can I will drive myself to hospital but am often told I was stupid for doing that and should have called an ambulance because people who were a lot less in need would call them but I feel if I am able to get myself there thats what I should be doing and if I can deal with my asthma at home then I should and do all I can to stay at home so to ease the burden on the stretched heath service.

Please stop and think if you do need the GP, or hospital or prescription. The NHS is on its knees but as a country we wouldn’t be able to survive with it and healthcare would not be accessible to all as it is now.

quote-the-nhs-will-last-as-long-as-there-are-folk-left-with-faith-to-fight-for-it-aneurin-bevan-120-46-49

Returning to work in a fog of smoke.

I have been back at work now on a phased return and it is going fairly well except for one part. When my chest feels tight I do find it a bit of a struggle to get from the car park to the hospital. The staff car park is the furthest out from the hospital and includes crossing the road that circles the hospital. It is not to far only about 400m probably but when your chest is tight it feels like a marathon.

To compound this staff seem incapable of waiting until they are either in their car or off the hospital site before they light up they cigarette and go on their way. I see them walking out the hospital cigarette and lighter in hand before they are even out the building- it is almost like you can see them itching to light it which they do as soon as they are out the building. It appears that they cannot survive without their nicotine that they don’t have a care for who is around them all they are focused on is lighting up and getting their fix not worrying about the effect they have on others as long as their cravings are satisfied.

I guess I am more sensitive to triggers now than I ever was before because of the attacks I have had since the start of the year- they terrified me and still haunt me. My lungs are still twitchy so any trigger will make me feel tight and wheezy. When I was off sick I longed to go back to work to have a purpose to the day and get back to the job I love but how can I do the job I love when getting into work I can only describe as running the gauntlet not knowing what I am going to have to go through just to get from my car and into safety of the hospital. This really hit me yesterday when I had 3 people in front of me smoking as I left the hospital to get to my car. I had to wait outside in the cold until they had moved far enough away that their smoke had dissipated and was no longer a threat. To me smoke is as much of a threat as a dangerous patient if not worse. You can’t call security for help from someone smoking but you can for a dangerous patient. I don’t mean to trivialise a dangerous patient but to me right now smoke is more of a danger to me than anything else. I don’t want an attack triggered- the fear of another asthma attack like I had grips me so hard I can’t shake it off.

I know you can’t go around dictating what people do but what I have huge difficulties with is that the hospital is meant to be a no smoking zone and there are signs everywhere which are just disregarded and no notice is taken of them. Many of the people I see out smoking are nurses. The same caring compassionate profession that I am in yet they really don’t actually care for those around them. There is nothing worse than being a patient and having a nurse come off their break smelling of smoke and you are sitting in a respiratory ward and could quite easily be set off just by the smoke that is lingering in their hair or on their clothes.

I think my issue that I have trouble accepting is that I did not choose to have my lungs like this. I am trying to do all I can to stay well and achieve what I want to do but I see all these people who choose to smoke and are choosing to do damage to their lungs and other peoples lungs. I do remember once I was subject to one persons smoke which caused me to have an asthma attack and go to hospital- the nurse’s smoke that caused the asthma attack was the nurse who ended up looking after me. I found this really hard.

I have rambled a little bit here but I am just so frustrated that by trying to work and get to work I am risking my own health to get inside the building. I have asked to move carpark to one that is closer so that the gauntlet I have to run is shorter and therefore the potential risk is much less but this is yet to happen and Im not sure if it will happen. It is a very small request but it does make me think what is the point of pushing myself to work when those around don’t want to try and help. To put it bluntly if those who smoke think about those around them and perhaps smoke only where they are meant to they would not effect other people, they would reduce the number of people who end up in hospital and therefore reduce their work load making their life easier.

This is a little bit off the deep end but its how I feel.

Clinic apps vs being a good patient vs being a bad patient

The past year I have found to be very long and it feels like one long constant fight for normality which I am losing little by little. Working in the healthcare profession I know all the well about the cost on the NHS when patients do not attend their appointments but recently I have really been feeling what is the point. I am not getting anywhere by being the diligent patient I am so why bother wasting my days off to sit in a waiting room full of people about 40 years + older than me who cough and splutter and most of whom who have smoked like a chimney half their life. Is sit willing to be called to go to lung function to get away from being stared at because I look so young. I hate lung function as it is but to get away from a germ infested waiting room is greater than my hatred of lung function.

The main issue I have and I know I am generalising as not all of those at clinic have smoked etc but could be like me but I long to have something to blame my rubbish lungs on. I think having a reason as to why my asthma is so fragile would help me deal with it better. Just now my consultant tells me I do everything right but I am just going to have these attacks and it is so hard to hear. Going back 6/7 years I could say I was stupid and reckless and didnt look after myself so had reason for having attacks but it was not the reason for why my asthma is so difficult to control.

Many days you can have a positive outlook and think “yes today is a good day and my breathing is ok” but then other days you think “my breathing is ok but why is it not good” or you get the days when breathing is crap but you got nothing on so you watch films but the hardest days are when breathing is really bad and you have to cancel plans you had made because of it.

Why am I rambling in this post. I think because I have a clinic appointment on a day I have other plans already made. Part of me just wants to sack it and miss clinic because I don’t want to cancel my plans and they won’t change my appointment time. The more rational side of my brain says that I need to go to clinic even though nothin may come of it but to be seen to be adhering to treatment and trying to get myself better I can’t go missing appointments. The one time i do miss an appointment will no doubt be the time that there are changes planned.

Its hard work but it is the reality of living with a chronic condition. There are so many things you can’t do when you want to and attending appointments is just another of those things you have to do wether you want to or not!

But I won’t be a drain on the NHS and waste appointments. I will go to them even if I don’t want to. It is just sometimes finding the motivation to go is hard!

23 days on….. and its only got worse!

smokefree_2

Smokers need to imagine what it is like to fight for your life, to work so hard to get that tiny bit of breath in to supply oxygen to your brain and body. They need to experience this. They need to fast forward 10, 15, 20 years and try taking those precious breaths which they won’t be able to due to all the damage from smoking for many many years. They will soon have to fight for each breath. Only there fight will never get better. Their obstruction will not be reversible it will be permanent, there cough will not go away, the chronic chest infections won’t get better with antibiotics they will be stuck in a downward spiral as their airways get smaller and smaller due to inflammation and obstruction. They will rely on Drs and Nurses to fight to make them better. They will need the help of social services and be left gasping for breath just getting out of bed or standing up. This will all be due to the years of smoking cigarettes. The feeling they will feel are the feelings they make me feel every time I have to pass someone who is smoking. They don’t give a second  thought about it. They think I am over reacting about the effect the smoke has one me. They will comment about it being a free country and they can smoke when and where they want without thought of the damage it does to others. They will expect the health service to look after them and some of the people they have made ill will have to be looking after the people who smoked.

lungs2

The day that you fight for your breathe and fight for your life will be the day when you experience exactly what many asthmatics feel like when exposed to smoke.

Back on the first of April I questioned wether or not the NHS going smoke free was a big April Fool. Its the 23rd April and it appears that the NHS are not going smoke free even though they say they are. Rules are made to be broken but this new rule seems to be the easiest one to break of all.

_66577038_smoking

I and many of my asthmatic friends would be the first ones to stand up and rejoice that hospital sites are meant to be smoke free. It would mean so much more than not having to wonder how many times you will need to use your inhaler from taking your first step into hospital grounds to getting inside the door. It would mean no longer having to walk the long way round to find a door not many use to enter the hospital avoiding smokers hovering outside, it would mean being able to do your job or attend appointments without being worse than you were when you left your own house. The list is never ending for the benefits of not smoking.

There are no benefits to smoking what so ever but occasionally when I am very frustrated and having trouble to breathe, part of me wishes I had smoked. If I had smoked there would be a physical reason why my lungs don’t work as they should and why I need inhalers, nebulisers and tablets to keep my lungs working. This only comes into my mind when I am sitting awake in the small hours of the morning using my nebuliser wishing there was a cause for all this illness which just now I don’t have.

This is why I can not believe what I am about to say. Never in my wildest dreams would I ever dreamt that I would be in favour of revoking the rule and allow people to smoke on site again. I am stunned I would even consider thinking such a thing, but the reality is I would prefer it. I hate part of myself for this as I know what it feels like not to be able to breathe and I watch powerless as strangers choose to inflict damage and give themselves a future of pain and suffering.

Why do I want this?

Since the ban on smoking on hospital sites it feels like there has been an epidemic of people smoking on the hospital site and they are everywhere. Around every corner there will be someone puffing on a fag. It has made getting from the carpark to inside the building a logistical nightmare trying to find doorways which are not clouded in a plume of smoke.

At least before there were smoking shelters which were used pretty well and for those who did not use the smoking shelters there were the hot spots where you could find a group gathered. You knew the areas to avoid but now it feels like there is no where to hide from people smoking.

The biggest irritation is that no one is patrolling and enforcing the ban. No one is picking people up on smoking and god forbid you take it upon yourself to suggest people did not smoke the looks and comments you got were not worth it.

As a worker on an NHS site I despair on many occasions. There are rules for everything and it begs the question why are some enforced and some not. For example parking. You are quizzed about why you are trying to get into a carpark on arrival at the barrier and if it not for a reason that is approved by the car park people you don’t get in. As a community worker based in the hospital I have to take a lot of stock out to patients which can be very heavy. The solution is that it is dropped down stairs and I then bring the car round. The number of times a warden has come to tell me my bumper is over the yellow hashed lines or I am in the wrong place is astonishing. Half the time I spend arguing with them about being allowed to park to pick up stock I would have been away far quicker had they not caused an issue. I would have been creating less of an obstruction. My issue is that there are people enforcing rules which are doing no damage at all and not preventing someone getting treatment or anything being detrimental to someones health yet a ban is in place to stop people smoking on NHS sites and there is no one to enforce it.

It is disgusting that they can get away with this. I am sure if I went (wearing a mask and protection) and sprayed air freshener or a substance with an unpleasant smell all the smokers would be up in arms about someone spraying something yet they have no issue making others breathe their smoke in when it could damage their health.

I was so annoyed last nigh about it as I suffered a bit of an asthma attack- nothing major on my way home from work as I was rushing to get my haircut, I wrote to Asthma UK, Asthma UK Scotland, ASH and also my local MSP about how the smoking ban on NHS sites has almost caused a bigger problem than smoking was before. At least before you knew were people were and could avoid areas. It was not ideal but it worked. Now previous “safe spots” are a hazard making an already slightly problematic task nigh on impossible. I decided to take action and will await my responses. It may not come do anything but for myself I feel better for expressing how I feel and doing a small part to try and make life better for myself and others who suffer at the hands of those who are selfish and smoke.

I feel so passionately about this subject more so than any others because it effects my ability to carry out the care I need to give my patients to ensure they have the best quality of life they can possibly have.

My whinge is over sort of!! Had a pretty awful day at work and it has left me questioning why I bother killing myself to do  the best job I can. Pushing myself is making my life very restricted. I love my job and I love my job so much that I am prepared to sacrifice some of my free time to rest and recover from hard days at work. But today I really wondered why I bother. Many more days like that its not going to be worth it as I really can’t afford to sacrifice any more of my social time to allow myself to rest and get better and stronger for the next day ahead. I have a lovely weekend planned as it is my Stepmums 60th so we are all going out for a family and friends lunch on saturday and then I have golf on Sunday before more golf next weekend!