Are asthmatics who post on social media one reason why asthma is considered as “just asthma”?

How often do we read or hear that asthma is “just asthma” and an inhaler will fix it all. Everyone knows someone who has asthma but not everyone knows how bad asthma can be and that it kills people. 3 people die each day in the UK compared to the 10 across the United States. I am not saying that 10 is acceptable but compared to the UK it is far better. In fact the UK has the worst asthma death rate for a developed country.

The big question is why do we have such bad statistics?

We have the National Health Service, Asthma UK, 2 dedicated research centres- the Asthma UK Centre for Applied Research and the Asthma UK Centre in Allergic Mechanisms in Asthma which is providing asthmatics with cutting edge technologies and trying to get a better understanding of asthma, the different types of asthma and best ways to manage it. Despite having all this, asthma as a condition is horrendously underfunded when you compare the funding given to cancer or heart disease. Asthma is way more prevalent yet still not fully understood. To begin to understand asthma, and the different phenotypes (types) there needs to be a huge input of money much like there is for other conditions.

Why is money not being given to improve outcomes of those with asthma? 

I believe that we as asthmatics have a role to play in this specifically the role that we play on social media. Over the last decade social media has exploded. Everyone (although there are some exceptions) uses social media of some sorts wether it is Facebook, Twitter, Instagram or LinkedIn. It is used for both social and professional use and although there are some restrictions in place you can post pretty much anything and it can be available to most who are looking for it.

I use social media in a number of different ways. Through Facebook, Instagram and my blog I can share my advocacy work and awareness about the condition, how I deal with it both the negatives and the positives, and also new medications that are coming out as well. Twitter is an excellent vehicle for knowledge exchange specifically for research as you can share snap shots of what is happening and not need to search a website and read through screeds of stuff.

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On Facebook one of my roles is that I moderate and administrate several support groups for those with asthma, severe asthma, difficult to control asthma etc. I feel very honoured that I have been asked to become a member of the admin team for these groups however it is tricky. Many of these groups can be accessible to anyone who wants and people can post what they want, equally they can post what they want on their own pages too. I believe this is where asthma or more specifically asthmatics get a bad reputation and unfortunately when someone reads something in one place then an entire groups can be tarnished with the same brush.

What am I actually talking about? I often get into trouble or arguments with people because they are not acting responsibly and not taking their condition seriously. This would be fine if they were keeping this to themselves but many are not, instead it is being shared on social media. For example:

“my breathing is really bad and having to use way more nebulisers than I should so need to go to hospital but I have stuff to do first”

This type of thing I come across on just about a daily basis and it makes my blood boil. We have a role wether we like it or not to take our asthma seriously and get help when we need it. Part of me feels that anyone on the outside seeing this would think why should be invest lots of money in asthma when those with asthma are not being sensible with it.

I firmly believe if you need to get help you need to get help, a shower, shopping, housework etc can wait. If you don’t wait you might not be there to do it in the future. No one likes going to hospital and many with severe asthma spend a lot of time going to hospital resulting in admissions and plans changing. It is not ideal but it is what it is.

I have had 2 friends die from asthma and know of many others through my work with Asthma UK and being involved in support groups that have also died. For some of them the reason they died most likely could have been avoided had they got help when they first started feeling unwell. I am sure if I was able to ask them they would say they wished they got help sooner as they might still be here now.

I use the examples of these 2 friends in response to comments people leave like above. This will often cause many to get angry with me but if you are unwell you need help there and then. People do not see this and expect sympathy and attention but if you do not act responsibly then you are not going to get sympathy. If you really want to live then you need to go and get help. There have been times when I have just wanted to pretend asthma is fine and I don’t need help because I have something on and don’t want to miss it but then I think of Dawn and it jolts me back to earth forcing me to get help.

Wether we like it or not we are ambassadors for the condition. The outward projection we give I think has a large part of why asthma is not taken seriously. I am blunt and will say to people that if they want their asthma to kill them then they are going about it the right way. It is very blunt but it is the reality.

I know for sure there will be people who read this and have posted irresponsibly  who will be angry. I do care that they will be angry but at the same time I don’t because what we post on social media can influence others with asthma who may be new to the condition and they don’t know any better and think what they read is ok to do. Remember asthma can kill anyone not just those with severe asthma so those new to the condition may see stuff and think because someone who has had asthma longer than they have must know best and it is ok but it is not. We must lead by example and if we are not going to then we must keep this private and to ourselves.

So how much is social media playing a role in the reputation that asthma has. I will continue to try and get people to understand why asthma must be taken seriously and that when you need help for your breathing you need help and should not go and have a shower etc first because you think this is the priority.

I am an ambassador for asthma as we all are. Asthma needs to be respected much like other chronic health conditions are and it is not acceptable to post irresponsibly on social media for others to see and be influenced by. We desperately need more funding to understand asthma better and if we can do our part to help achieve this we might get there quicker than we are now.

Rant over but bottom line is: social media can be toxic in how people view asthma because of what those with asthma post for the public to see.

RIP Dawn

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International Nurses Day

The birthday of Florence Nightingale it is only natural that this is also international nurses day given she was the founder of modern nursing as we know it.

When I left school I was the last person anyone would have thought would be a nurse. All I did was sport, all I talked about was sport. I was sport and it was all I had. A series of events happened in life and I had to rethink my career and I somehow ended up doing nursing and I could not be happier!!! I had so much fun doing my training and then got a job in an area I never thought I would end up but being a renal nurse is pretty special and I don’t think any other area you will get the same relationship between nurses, patients, Drs and families.

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This photo was taken just after we passed our final OSCE’s in 3rd year!!!

I miss putting on my cornflower blue uniform everyday. I loved being a nurse and will be back as a nurse when my lungs get better. Being a nurse is hard work, busy, never time for a rest and you never know what will happen next but seeing the improvements in patients is the best feeling you can have. Even if it is the little things like sitting chatting to them or helping them with a wash and getting their own clothes on, it is so rewarding. For me it is even more special as I have been on the receiving end of nursing care so many times and the nurses that take that extra bit of time to just do that little something means so much to me.

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This uniform means so much to so many. For me it gives me a purpose. While not being in renal this year I keep my uniform out so on days when I am feeling dejected and thinking about what I should be doing had my health not stopped me, it is there reminding me what I am aiming to get back to. My life as a nurse is not over, it is temporarily on hold, while I focus on research and getting my health better so I can go back to doing what I love with a body that can cope and the energy to give it my all.

I also owe my life to nurses. Having asthma like I do and requiring hospital treatment, admissions and appointments I come across a lot of nurses. The nurses have made sure I am alright, helped me wash when I am too weak to do it myself, helped me go to the toilet when just moving from the bed to commode is too much for my lungs, even just holding my hand when I am finding the situation terrifying because every breath is a fight and requires more energy than I can muster. The presence of a nurse just being there adds this security so I know I am ok.

When you live with a chronic condition which lands you in hospital fairly often you end up getting to know the staff in the wards. For me it is the respiratory ward. I always end up going to the same one now particularly since moving consultants. I also have to go to the respiratory ward once a month for my mepolizumab injection which is given to me by the asthma nurse specialists who take such care and will always answer questions I have or even just reassure me that I have done the right thing. One draw back which when I am not in hospital it is not a draw back is that the nurses now know me well. They will not hold back when they know I need pushed and just to buck up a bit. They will tell me to stop being stupid or stop being grumpy etc, at the time I hate them for it but I know they are doing it for my own good otherwise I would wallow in self-pity until I snapped myself out of it. Equally those nurses know when I am not doing well and am struggling, because they know me they know when something is up.

In NHS Lothian there is an awards night which celebrates the work of different people across the trust. Not only nurses, but Dr’s auxillaries, domestics anyone. The shortlist has just been released and it was fantastic to see one of the nurses from Ward 54 (the respiratory ward I attend) is up for Nurse of the year. I am thrilled as he is super. I have known him for a number of years, he is always so caring and takes time with his patients even when he has 101 things to do you never feel like you are being rushed, he gives you the time you need. He also always speak to your relatives and takes an interest which is really special. Nurses just now are stretched beyond belief, moral is low and nurses are required to do more and more jobs than before but with this nurse you would never guess. I really hope he does win the nurse of the year as he is so genuine and acts the same way to all his patients.

I want to thank all the nurses who have looked after me and worked with me. If it was not for them I would not be here.

Parking is not the only issue at the RIE

In the press today and on social media there is a lot of energy being focused on the Royal Infirmary in Edinburgh and its issue with parking. Ever since I have worked at the RIE there has always been an issue with parking. There has never been enough parking for the number of staff let alone patients or visitors.

This summer the new Sick Kids hospital is moving out to the RIE site as well as DCN. Now the new departments have been built on one of the previous car parks and there has been no replacement car parks being put in place.

There is up roar about this especially as staff have to pay to park. You can apply for a permit which costs £25 a month but these are now in short supply and to qualify for a permit you need to meet certain criteria. I remember when I was applying for my permit first off having a blue disabled parking badge did not move me up the line I still had to wait. I did eventually get a permit and was able to get a permit for a car park close to the hospital because of my blue badge but this to me is almost a waste of time because the welfare of the people working there is not addressed or prioritised.

For me and many others one of the biggest issues at the Royal Infirmary in Edinburgh is the smoking issue. There was a supposed smoking ban on NHS Lothian sites but what it seems to have done is nothing more than encourage people to smoke right outside the hospital doors. I remember just after the smoking ban came in I was working a night shift and halfway through hand over I had to get taken to A&E due to an asthma attack as a direct result of making my way into the hospital from my car. Sadly this was not the only occasion this occurred. There have been at least 6 occurrences where me getting from my car in the car park to the front door have resulted in me being exposed to people smoking where they should not be and ending up requiring hospital treatment and sometimes needing to go to intensive care.

Just now I am on a career break focusing on research but I am very concerned about going back to work next year. I will need to reapply for my permit but also if I don’t have a permit I will need to either pay for parking which is not always guaranteed, or risk getting public transport which could put my life at risk. I worry that will my hard work this year to get my health better be then set backwards by the risks that are involved in just getting into the hospital.

I have tried to speak to anyone who will listen about the smoking issue which is particularly bad at the Royal Infirmary but it seems to fall on deaf ears. The really shocking thing is that an area which is probably the worst for the number of people smoking is right below the respiratory ward and not even that is doing anything to get the smokers moved. I am not against people smoking- it is their choice if they want to end up giving themselves COPD and a self inflicted breathing condition but I am against them inflicting others to their bad habit. I didnt do anything to cause my lungs to get like this they are just like that so I do not expect to have them deteriorate as a direct consequence of someone breaking the law and smoking where they should not be working.

The most shocking bit about it is that the Royal Infirmary in Edinburgh are happy to patrol the car parks and put tickets on cars which are parked in the wrong place but turn a blind eye to people smoking. I tell you a car parked in the wrong place does a lot less harm than people smoking.

When it comes to April 2020 I will need to think about wether it is worth the risk  to come back to work if the smoking issue is not addressed.

It is a sorry state of affairs when healthcare workers are questioning wether they continue in the career or where they are working because there is not adequate provision to support them.

 

The NHS Long Term Plan

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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.

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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.

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NHS Research Scotland Away day!

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

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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!!!!

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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:

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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.

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