You can disagree with your Dr, its called self advocating.

Yes Dr, I will take that as you prescribe despite the horrible side effects stopping me living my life.

How often have you found yourself doing this? Do you know that you can speak up and disagree with your Dr or healthcare provider.

In the UK when it comes to healthcare traditionally we are not very good at speaking up for ourselves. We often go with what the Dr or Nurse says because they have done the training and what they know is best. This is a very antiquated view now I think yet we still want to please our Dr’s so will do what they say and take what the prescribe. We often think if we don’t do this we are seen as a difficult patient and no one wants to be a difficult patient do they!

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Speaking up for yourself can be daunting, I remember thinking I can’t question a Dr, they went to medical school for 6 years and have done countless more years honing their skills in whatever speciality they chose so who am I to question them. I only live with the condition I don’t (or didnt) know the physiology behind my diseases or the best treatments for them. This is what the Dr’s know.

I wish 14 years ago I knew what I know now. I have written about this before but 14 years ago my Drs had me on prednisilone (which frustratingly I am still on) and kept weaning it down as they did not want me on it long term. I didnt understand the long term side effects of prednisilone at the time but was getting fed up of feeling good while on higher doses of pred but then start feeling awful as the dose reduced and came off it. It was like a constant rollercoaster. My answer to this was just not to take the pred. I didnt feel good not taking it but at least I was not feeling great to then have that feeling taken away and I would go back to my life being put on hold. I found that I preferred to know where I was with my lungs and adapt to life where my lungs were not that great. This did not work out well for me on several fronts:

  • My health was awful, I couldn’t do anything, I was missing out on life, friends, sport, uni.
  • My mental health was at an all time low because I couldn’t do anything with my friends and just be a normal student, but I could not cope with being able to do things with my friends while on a high dose of pred for it to then be taken away again.
  • I was lying to my medical team, how could they trust me if I was not doing what they wanted me to do.

It all changed when I managed to get a chest infection and put off going to the Dr. I ended up in intensive care really poorly. I was questioned by my consultant about why I waited a long time to get seen and go to hospital and why did I not put up my prednisilone according to my care plan when my peak flow dropped.

It was then that I opened up to the Dr and said what I had been doing and why. I explained that I didnt like knowing that while on a high dose I would feel well and be able to do stuff and then the dose would be reduced and I would not be able to things because of my chest so would prefer to just not know what it was like as it was a false sense of reality that was just then taken away.

Once I recovered from that hospital admission I had a meeting with my consultant and asthma nurse to have a frank discussion about my asthma, asthma care, medication regime and care plan. This was the first time I felt that it was ok to speak up and say to them what was important to me in life and what I wanted to be able to do etc. It was great as we were able to work out a lot of things and while I had to make compromises as it is not possible to do everything I wanted to be able to do but now my consultant really understood me as a person and our working relationship grew because I was able to be honest. I was also able to bring suggestions to him about new medications I had heard about. It became a 2 way conversation which I have now always made sure I have with all my Drs and nurses involved in my care.

It can be daunting at first to advocate for yourself but I can assure you it is the best thing you can do. Drs know conditions and medications but they don’t know you and your life unless you speak to them about it. We didnt choose to develop chronic health conditions but we do choose the life we want to lead and this includes how we manage our health, what medications we are prepared to tolerate and what we are not. Some side effects may be ok for some to put up with but not others depending on life situations. For me just now I don’t mind my dose of prednisilone changing quite a lot because I am not working (I find that when the dose changes my insomnia is so much worse) but if I was working then I would speak to my Dr about not having the dose fluctuate so often so I could try and manage my insomnia better.

Self advocating is not about arguing to get your own way but it is allowing your medical team to work with you to get the best management plan for your condition and your life. If you as a patient are involved in the decisions about your care and agree with them then it is highly likely you will be a more compliant patient with medication compared to a patient being told what to do and what to take when who is less likely to comply because it is not what they want to do or it does not fit in with their life. No one likes being told what to do but if we are involved we are more likely to follow instruction.

It is important to remember that while self advocating is good, not everyone feels comfortable doing it and would prefer to just do as the medical professionals say. That is fine too.

I am so glad that I was able to learn that my voice as a patient is just as important. I do have knowledge, I am an expert patient in my own health and my conditions. I am allowed to bring my thoughts to the table when Im in appointments as I need to try and get the best management for my health possible.

I will leave it here but I would say self advocating does not make you a difficult patient, it makes you a patient that cares about their health. This is why I self advocate and why I am also a wider health advocate and will advocate for various health conditions like severe asthma and allergies.

Being a Health Advocate

and how does it differ around the world??

Last April I was in Dallas Texas attending the HealthEvoices (HeV) meeting. A meeting for health advocates to meet and learn from each other. I went out there thinking I knew what health advocacy was but I was wrong to some extent.

A while back I put the question out on social media “What does health advocacy mean to you?” and I got some very interesting answers. What I found most intriguing was that there was a clear split between thoughts in the UK and then thoughts over in the US and Canada.

Pre HeV my understanding of health advocacy was essentially speaking up for yourself or family member to ensure you can get the best treatment, or best healthcare you can for your condition to ensure you can live as independently as possible and without too much interference from your health condition.

I also thought advocating for myself meant me speaking up to my healthcare providers wether it be my asthma consultant, asthma nurse, GP or whoever and tell them the parts of my treatment I did like, the parts I didnt like and also the things that were important to me in my life. I have spoken before about a period in my life when I didnt like the treatments I was on because of the side effects and the amount it intruded in my life so instead of speaking up and saying this I just stopped taking the medication and didnt say anything until I got really unwell. I thought I was wrong to tell my team that I didnt like the treatment they wanted me to be on because they were the drs after all!! It took for me to get really unwell to be able to tell the Drs why I ended up so unwell. They obviously asked me why I didnt tell them rather than just not taking the treatment, but I thought I didnt know as much and had to do as they said. From this point on I learnt that I could speak up for myself and say to the healthcare team that this was my views and opinions etc.

This is on the whole what those in the UK replied with when I asked about health advocacy.

In contrast others mainly (with some exceptions) from the US and Canada said that health advocacy was the sharing of ones own experiences and knowledge to help others and raise awareness for that condition. I think in the UK we would see this as raising health awareness.

Since attending HeV I have wanted to bring this contrasting view of advocacy to the UK and really advocate more for those with chronic health conditions and how you as someone with a chronic health condition can get the best information, and be able to live your life alongside your health condition and not put your life on hold because of it.

What words describe you?

Hero, warrior, asthmatic, advocate, inspiration, strong are just some of the words I have had people refer to me as recently. While I really appreciate them and am flattered I feel uncomfortable hearing them.

Some adjectives I can learn to adapt to such as advocate but others not so much.

The word health advocate a year ago is something I would never have applied to myself and a term I did not feel comfortable with. Over the last year I have got used to and embrace the term health advocate and will embrace it for years to come as that is what I am and I want to be the best advocate I can be not just for myself, or my condition but for all those with health conditions.

I think the reason I find some of the words so hard to accept is because I don’t want to be thought of as that. I have a chronic health condition that means I have to fight each day. If I didnt then I would be sitting at home doing nothing and that is not in my DNA, but also what life would that be.

Im also lucky this has been my life for so long that actually I cant remember what it feels like to feel well, every day I rely on a cocktail of medications but even that is not enough to make me feel “normal person” well.

I share my story about the ups and downs of living with chronic ill health to try and get more awareness about the disease itself, so others living with the condition know they are not alone and then also to show the real life struggle so that policy may change or new drugs might be developed so no one will have to go through the tough times that I have in the future.

When dealing with a condition that you don’t know when it is going to hit and take you out with an attack you need to make sure you are strong and not just physically but mentally as well. Getting through an asthma attack is as much about physical strength as it is mental strength. This mental strength which I put down to the way I have been raised but also my sporting background has allowed me to not only push through attacks but also push myself so that I get up each day and do something productive no matter how small it is as long as I have achieved something in the day I don’t care.

I am really flattered by some of the words people have associated with me and the way I have dealt with living with ill health. I don’t want to come across as rude or ungrateful as I know everyone is sincere and means it but recently I find it even harder to sink in as a condition I have always been able to beat is finally beating me and dictating my life more than it ever has before so to hear these words are more difficult.

Once I get back on my feet and know what is going on with my life then I will maybe be more accepting of the terms people use to describe the way I face situations.

Getting medication on time.

I am not actually sure what title to give this post.

I was recently in a consultation type meeting with a range of service users to discuss the nursing program at one of the universities in Edinburgh. They are being revalidated and want to make sure that the course is producing the best possible nurses it can who are fully prepared for life as a staff nurse.

One thing that came up that has been preying on my mind and the more I think about it the more it bothers me. As the group was made up of a range of people age, gender, background, reason for being at the consultation. There were a few people there representing Parkinson’s- either as someone with Parkinson’s, a carer or someone who works for Parkinsons UK.

The issue of medication came up in conversation and it felt like some had a bit of an agenda as they kept going on about how people with Parkinson’s when in hospital must get their medications the right time otherwise their can be negative effects if it is late. This was a statement that was repeated many times stating that the medication often had to be given out with normal drug rounds.

It felt like to me that those with Parkinson’s,their medication was more important than other patients who need medication. I take medication which is prolonged release and has to be taken at specific times which are out with normal drug rounds and must be taken otherwise blood levels drop and this can have a detrimental effect on my breathing and could cause an attack which may or may not end up needing intensive care.

What bothered me so much is that there was no regard for other people and their conditions and the medication that they are on. I know from experience of doing drug rounds it is very difficult to juggle everything but we do our best. Every patient is just as important as the next and every patients medication is just as important to them as all the other patients. If a patient was able I would ask them to remind me to come and give them their medication if it was out with a drug round or if able I would let them self medicate so they would get their medication when it was due. This can not always be done so we as nurses need to remember and we do try. I was thinking as a nurse if I went into a bay of patients and only did one patients drugs and told the others they would get theirs done in time but this patient needed their now. It would make me feel like I was selecting this patient and treating them differently to the others.

What I am trying to get across is that every patient is just as important as the next and everyones medication is just as important to them as the next persons. There are many medications which like the medication for Parkinson’s needs to be given at set times otherwise there is detrimental effects. I really felt like there was no regard for other people and their condition. Parkinsons is an awful condition and I have a good friend who has had Parkinson’s since the age of 8 but getting medication on time is just as important for us as well.

Im not sure if I am saying thins properly and if its making sense but everyone is just as important and medication  being on time is no more important for someone with Parkinson’s than someone with diabetes or asthma for example.

As a patient I advocate for myself. I ask the nurses if I can self medicate that way I remove the anxiety that can develop if I am not able to get medication when I need it. For example if my chest is very wheezy I am able to put a nebuliser on and then let the nurses know, or if my prolonged release theophylline is due I ask the nurses for it or if they are doing a drug round ahead of time I ask if they can leave it out so I can take it when it was time. Nurses try their best and do what they can but we as patients need to advocate for ourselves to make sure we get what we need when we need it but doing it in a way that is not being disruptive and demanding.

I hope I have not come across as disregarding people with Parkinson’s and the importance of their medication as I know it is important but other medications for people are just as important. I always worry when I attend these type of consultations when there is a few who seem to have an agenda or dominate conversation.

I am going to leave this now but would appreciate others thoughts on this post as it has had me thinking a lot.

Friendships from HealtheVoices

My social media platforms have been filled over the last few days with posts about HealtheVoices. The application deadline has been and gone. Yesterday people received their emails saying that they were accepted to HeV20 or were waitlisted or did not get in at all.

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It fills me with joy and sadness. Sadness because I made so many friends from HeV19 that I won’t be able to see this at HeV20. With my health the way it is there is no way I can make the long travel without health consequences and be able to enjoy the conference. I am really frustrated by my health and I have always been able to beat it, get on top of it but not this time.

I am so thankful to have been able to meet some wonderful people who have stayed in touch with me. They included me in their group conversations welcomed me into their fold and I just felt like one of the gang.

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I am excited though that thanks to modern technology and the wonders of prednisolone and predsomnia I will be able to log on and watch the HeV conference live from the comfort of my own bed.

My favourite moments from HeV19 were:

  • At the opening session being pulled up for wearing a matching “plaid” shirt. Thank you Gabriel Nathan. You are excused as we have so many more matchy things!!
  • Being given a mahoosive bag of swedish fish from Kathy who we actually ended up put on the same table too!!
  • Presenting about being a patient partner in the same session as the awesome Tonya Hegamin. Her books are brilliant.
  • Having the mick taken out of me for my breakfast choice but then getting a care package of “breakfast soup” socks from AnnMarie. Also lip syncing Spice Girls with her Brady and Robert too.
  • Meeting Scott White the company chairman of J and J and bonding over living with severe asthma!!
  • Meeting and being brought into their fold the baddest bunch of diabetics particularly those we went to In and Out Burger Tripp, Phyllis, Chelcie, Christel as well as Corinna, Sue, Kristen.
  • Getting some awesome headshots from Rick Guidotti and becoming a PEARLS Ambassador
  • Meeting the fantastic HeV team who go above and beyond to make sure every advocate is happy, healthy and comfortable.
  • Lastly spending some awesome time with Mike and Eileen in Dallas. Its not many people I would happily wander through a graveyard with- Eileen!!! I had such an awesome few days with you both and it topped off a great trip!!

For now I want to leave all these photos of friends I made and friends I will hopefully see again perhaps at HeV21 if I get in!!!

 

 

What do you do when you have a bad or good travelling experience when you have a disability?

I have been very lucky that despite my asthma I have been able to travel (mainly to attend conferences). I have travelled via a variety of different methods: train, plane and taxis.

Thanks to the hidden disability lanyard I have been very fortunate in the treatment I have received in airports. I have also been able to use it on trains but now that I am walking with a stick I have noticed people come up to me more to offer help or get up from seats and give me theirs.

I decided to write this blog after some time to think as at the time I was angry, humiliated and really not thinking in a constructive manner. I am now thinking about how to change this negative experience I had into a positive one.

In September I went to Madrid to attend the European Respiratory Society Congress. The travel out was spot on. Arriving at the airport I had my sunflower lanyard on and was helped with my bags at check in and offered the use of a wheelchair to get me up and through security. I declined as I knew I would be seated for a large portion of the day so wanted to take the opportunity to get some walking done.

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The one point that most people dread when going through the airport is security. I know I do. Having a hidden and visible disability and wearing my sunflower lanyard I went up to the special assistance gate at security. An officer asked me if I needed some help. I accepted and she helped me take my laptop and then medical supplies and put them in the trays. She then escorted me to the bit where you walk through the scanner. She explained that they needed to put stick through the X-ray but they had a wooden stick for me to use while I got through the scanner myself. Due to my inability to walk without my shoes and splint on, they made other arrangements and swabbed my shoes, provided a chair for me to sit on while they did this and also stayed with me to help me put everything back in my bag and make sure I was ok.

Boarding the plane was the next challenge. All sorts of thoughts were running through my head. Dreading the thought that we might have to go on a bus to get to the plane and then climb up stairs to get into the plane. I was able to ask at the gate what the boarding situation would be. I was then asked to take a seat behind the gate where I was introduced to the crew and then told I would board the plane when the crew went on too.

It was all so seamless and almost had that too good to be true feeling. It was really refreshing to have such good service in what can be quite a stressful time. I have sent a compliment form into the the airport and BA who were the airline I was flying with.

On the way back the airport experience was polar opposite until I reached the gate to board the plane.

Arriving at security I once again had my sunflower lanyard on and went to the special assistance area for security. This is where I can only say I felt humiliated and felt like totally breaking down. No help was offered at all. I did asked for some help but this fell on deaf ears. The area was not particularly busy so I was shocked that my request was turned down. I sorted all my stuff and got my medication and medical devices out my bag and into a tray, pushed them up the line till they went through the X-ray. I then went to walk through the scanner and was greeted by a security officer who spoke good english and told I couldn’t take my stick through or wear my shoes or my splint. I asked if I could wait and they could go through then if I could be given them back so I could walk through. I was told no and then my hands were taken and I was just about dragged through the scanner, almost falling flat on my face. I was tripping over my foot as I cant move it myself and have no feeling below my knee. I was crying inside just wanting the ground to swallow me up, hating myself that as a young person I was being humiliated in such a way. I kept thinking I should be able to walk normally, I shouldn’t be in this situation. Once I had been dragged through the scanner, my hands were dropped and I was left to try and get myself to the trays with my stuff in and get myself sorted.

I managed to get myself sorted without totally breaking down. On the way out of security there was one of those things that has buttons asking me what my experience was like. I obviously pressed the button with the red sad face. A man then came an asked me why I pressed it. I gave a brief description of what happened and the man just nodded me. No offer of apology or anything.

I just pulled myself together and then joined the others I was travelling with, putting the experience behind me so no one would know just how upset I felt inside.

The rest of the travel home was seamless. I travelled home with Easyjet and once again the staff were very helpful. Unfortunately the seat I was in was considered an emergency exit but they found me another seat which was actually a whole row so I could put my leg up.

After all of it I was so glad to get home and back in my own environment.

One thing I have learnt and looking back I would have done things differently. While in security at Madrid airport I would have advocated for myself. I would have stood my ground and made sure my needs were met rather than be humiliated as I was. I wish at the time I had been able to stand up for myself but I was caught by surprise so I guess I was really shocked. You don’t expect it.

In future I will be prepared. I will have a written explanation of why I need the stick, that I cant walk without it or without my splint, and also what my medical conditions are. I will have this all written in the language of where I am going to. I will also use other communication cards in the language of the country I am going to. I want to be prepared and I don’t want to go through this experience again. I also don’t want others to have this experience as it really destroyed me, my confidence in travelling solo with no support has dwindled. I should be able to travel Im a young person who wants to experience life not be humiliated and shamed into not wanting to travel only own again.

If anything can come from this experience it is that I have learnt more to advocate for myself and also use my situation to prevent others having similar experiences.