"Experience of Royal Alexandra Hospital"

About: Royal Alexandra Hospital / General Medicine Royal Alexandra Hospital / Neurology

(as the patient),

I visited my GP in September after having had a very severe headache in the early hours of Saturday morning. I was sent to the Royal Alexandra Hospital (RAH) in Paisley for further assessment.

Blood was taken for testing and a couple of doctors spoke to me including one who speculated that what I had suffered from was a sub-arachnoid haemorrhage. I was already in a very stressed state when the tests had started and staff were aware of this. Although I was partly reassured by the fact I had no ill-effects the mention of the above term set me into a panic.

The doctor went on to describe a medical procedure for dealing with such a condition. This exacerbated the level of fear as it was explained that a metal coil would be inserted into the back of my head but “not to worry – we don't drill a hole in your head, we insert it through an artery”.

If you can imagine for a second what it feels like to be the kind of person who already has an irrational fear of hospitals and medical procedures then consider what effect this kind of statement would have. I have never heard the word haemorrhage used in any other context than in a description of someone dying.

Throughout that day I just wanted someone to speak to. I am not a religious person but the fear of imminent death brought up all sorts of questions for me – not in relation to any kind of faith but mortality in general. In short I was more scared than I’d been at any point in my life. I just needed to speak to someone.

A doctor came back and I was told a lumbar puncture would be necessary to confirm the diagnosis. Again, another term which terrified me. I’m sure these are every-day terms for medical professionals but for someone in the state I was in I struggled to find any reassurance.

Before the procedure I heard a doctor talking to another colleague right behind the curtain to my bed. The colleague asked the doctor if they'd carried out a lumbar puncture before. The doctor said they hadn’t but had seen it done. This wasn’t something I wanted to hear.

Prior to the lumbar puncture the doctor spoke to me and said I looked stressed, asking why that was. To me it seemed inexplicable to ask such a question given what had been said to me. I tried to explain how I felt but it didn't seem to register.

The other doctor reassured me that there was little risk in the procedure and that all I might feel is a tingling sensation and if I did I should tell them. This doctor's approach was much more reassuring than anything I had heard that day and I was offered the opportunity of being talked through each step of the way but I said that’s exactly what not to do so they took this onboard.

Two results came back negative and I was allowed home that night in what felt like the longest day of my life. I phoned in the following day and was told the last result was clear too.

I suffered from some extremely painful pressure headaches as a result of the lumbar puncture procedure for the next few days. I hadn’t expected anything like the vice-grip feeling on the inside of my head. I had been told “some people get headaches” but nothing more.

A week later I received a phone call from one of the doctors asking me to come in for another scan. Immediately I felt the terror I’d felt the week before.

I attended the scan a couple of days later at 9.30am and went back to the Medical Assessment Unit where I’d been the previous week. At different times staff spoke to me to reassure me that the scan showed nothing out of the ordinary and that they were unsure why the scan hadn’t been confirmed by a radiologist.

As the day went on there were times I could hear the staff discussing my condition but I received no update. Later on I was moved round to a temporary bed where I was within eyesight and earshot of the staff desk area. I could see people scrolling through my scan and in the late afternoon I heard them discussing my case and debating it. I was shaking by this point and feeling physically sick. One I heard one doctor say that “there’s a bigger issue and it needs to be investigated immediately”. At this point I reached the highest level of stress I have ever experienced. I assumed, once more, that I was about to die. Imminently.

Later that evening my friend arrived and was shocked to see the state I was in. A doctor came in and told me they had found a clot in the scan. In my head this confirmed my fears (if fears is strong enough a word). To my surprise they said that this was treatable but that I would need to be admitted.

I had woken up that day in the hope that I would go for the scan, return home and go to my work. The Saturday was to be spent travelling to London to play in a national final with my team, the culmination of years of hard work. Sadly, the timing of the headache and hospital meant that I would miss it.

I was put on Warfarin and an injection (can't remember the name, might have been Deltaparin?) and admitted into a ward over night. I still had the canula in my arm from the scan I’d had that morning and had asked a couple of times for it to be removed. As I’ve mentioned medical procedures, even taking blood cause me a very high level of anxiety so it was constantly on my mind. I knew staff were bust so didn't want to be seen as a problem patient so it was left in overnight despite my requests to have it removed.

With the stress and the physical reminder of the canula in my arm I don't think I slept that night. I’d never been in hospital overnight so this was a new experience for me.

I was in the hospital over the weekend. I’d been told a Neurologist would follow up with me on my case but no one was sure about whether a Neurologist would be at the hospital as it was the holiday weekend.

I saw different doctors over the four days. One said to me on Saturday morning that there was really no need for me to be in there but that it was just to get my blood levels stabilised. That reassured me for a while until my mind ran away with itself again. Another doctor on the Monday saw me on the ward. He remembered me from the Friday and was asking how I was. He had a very good bedside manner and helped to calm me down, telling me I would be ok. I don’t think anyone had said that before then.

I then attended the hospital as an out-patient for the next two weeks. Each day I had to have blood taken for tests to ascertain what dosage of Warfarin I should take. Unfortunately the RAH did not have the equipment that takes a small drop from your thumb so it was another needle in my arm.

As someone who passed out when the blood was taken on my first visit this I found this difficult. Each day I would wake up, remember where I was to go and spend a couple of hours stressing about it. Staff were very good and tried to reassure me but by this time I had developed a severely negative association to the hospital than I was often on the verge of a panic attack with every visit. It would take me hours afterwards to calm down but I knew the next day would be the same.

I was advised against going on a holiday that had been booked some time ago. I’d had to take it at this time of the year because of when my team’s season finished. It was disappointing to have to cancel it but the advice from staff was that it would be “best not to go” on the basis that my blood levels were not stable. No one could answer my question about whether flying would be a risk to my health with the clot in my head.

On the first Wednesday I sat in the waiting area and saw one of the doctors from the Medical Assessment Unit talking to the nurse. It was the one who couldn’t understand why I was stressed.

I was terrified once again, worrying they were going to tell me something else was wrong in my brain. After the blood was taken I asked the nurse if the doctor was there to speak about me. The nurse asked me to go through and see the doctor. I’m embarrassed by what happened next – I physically backed away from the nurse asking in a panicked voice why and if I had to. The nurse looked genuinely confused by this and said they didn't know but that I should go through.

I’d gone from haemorrhage to blood clot and could only assume it was going to be worse. I shuffled through to the ward and was allocated a bed. When the doctor came in I asked what it was and wast told it was just an examination. This didn't mean anything to me so I asked what that meant and it was just a simple physical examination. I was so relieved but again the doctor said they didn't know why I was so stressed.

The following Sunday there was a difficulty in getting blood from either of my arms as by this time they were very bruised. Unfortunately the nurse that day hit something else on the way in which caused a lot of pain and had to get a doctor (the one who didn't know why I was stressed) to assist and took blood from the vein on my bicep which turned out to be a lot more straightforward.

Between that experience and the one on Wednesday I made an appointment with my GP on Monday morning to see if I could be given something to calm me down. I was embarrassed by my reaction to visiting the hospital each time. I didn’t feel in control of anything I said, did or thought and it was a very low point for me.

I’ve suffered depression all my life but took the decision to come off the medication two years ago and I’ve balanced my life and wellbeing through exercise. Even this short time away from any form of exercise was affecting me and the combination of the extreme stress I was experience meant I was feeling very low and unable to cope.

I was given an appointment that afternoon but had my visit to the hospital in the morning. It was a new nurse at the DVT clinic who read from my notes that I need to lie down. I laughed and said that was an understatement. Before taking the blood however, she spoke to me for quite a while and asked what it was that I was so stressed about. This was the first meaningful conversation I’d had. I told her I thought I was going to die, that I didn’t understand what the condition I had was, how it had happened or what was going to happen to me for the foreseeable future. And I cried.

I apologised for the emotional outburst and she asked me if I had cried since this had all started. I thought about it and said no because in truth I hadn’t. I’d bottled everything up and had spent the past month with a mind full of sheer terror, with thoughts out of control and imaging I was facing death every minute of the day.

She made a very astute observation and said to me that I was, for the first time in my life, having to deal with the concept of my own mortality; that as someone whose life has been focussed on physical and mental wellbeing for the past few years has been threatened by something I didn't understand in an environment that itself caused fear. I cried again at that point.

She told me some things about my medication and provided me with a level of reassurance that I hadn’t experience up until then. The visits to the hospital were infinitely easier after that.

I was discharged from the clinic when my levels had finally settled and attended the local clinics that had the machine that only requires a drop of blood. These were much easier for me.

I received a letter with an appointment to see the Neurologist in October. This was a month after the diagnosis of a blood clot. As you may have gathered by now I was not exactly calm in attending this appointment. I assumed there was more bad news for me. To my extreme surprise the Neurologist told me that what they had seen on the scan was not a clot but a variation in my make-up where a vein splits into two rather than one. He asked about the circumstances of the headache again and confirmed it as a form of migraine.

I was stunned. I had a page full of questions to ask about concussions (a severe recent one and others in past that I had experienced) and he said there was no damage and that I could go back to full-contact sport in a week. I don’t think I’ve ever received more welcoming news. I’d been given an all-clear.

He said that he had consulted with a radio-neurologist and that the scan had originally been confirmed by a Radiologist and that the lumbar puncture showed there was definitely no bleed.

Later that day I started to question why this diagnosis had been made now and how it could be made with the same information that was available a month ago. And if the lumbar puncture showed no bleed then how could there have been a clot? When you’ve been told the things I’d been told in the past month and put your whole life on hold you start to question things.

My GP explained that the multi-disciplinary meetings would have reviewed the case and this might have taken time. I just wanted a line drawn underneath it all so I could go back to normal life.

Over this period I’d been told there was no bleed, that it was highly unlikely I had a bleed, that the clot might have been there all my life, that the Warfarin would break it down, that Warfarin doesn’t break down clots but that it reduces the risk of further clots and most recently that there definitely wasn't a bleed or a clot. I asked if this was the final diagnosis and my GP said it should be.

In late November, when I’d got my life back to normal I received two letters from the RAH. One from one of the first doctors I’d seen (the one who speculated about the haemorrhage) telling me that my “unexplained bleed” would be investigated by colleagues in haematology and that results from blood taken when I was on Warfarin were unreliable.

The fear came over me again instantly until I realised that this doctor was still under the impression that there was a bleed and that the Neurologist’s diagnosis had obviously not been communicated. The other letter was from haematology with an appointment for six months time (when I was to come off the Warfarin).

Not only did this highlight the lack of communication but it also suggested that the blood test they took weeks ago when I was on Warfarin was useless and should not have been undertaken.

Taking advice from a friend who works in the health service I contacted my GP and asked that they write to the doctor and the haematology unit and tell them I would not be attending, that I had been given the all-clear with a revised diagnosis and that I did not want any further contact on the matter as in effect there was nothing to investigate.

It’s now the end of December and I’ve heard nothing since so am happily back to normal life of work and working out at the gym. Whilst I fully appreciate people having been over-cautious in their care of me there are a few areas where I think the service could have been vastly improved in relation to a person-centred approach:

• Ask patients if they want to hear the speculation of what they might have, don’t just assume they are comfortable with the language and terms used

• Don’t discuss medical inexperience behind a curtain of a patient’s bed

• Continue to ask, as one doctor did, what kind of information I want (e.g. every step of the way or no description at all)

• Communicate fully what the process for diagnosis is, i.e. who will be involved at what stage and when

• Improve communication between services and departments so that when a patient has been discharged or receives a new diagnosis all relevant services know

• Encourage doctors to consider that patients might not be as used to the terms they use and that it should not be assumed that everyone is as confident as they are

• Improve communication within hospital settings so that it is understood whether clinics will run or not during holiday periods

• Consider the use of volunteers in acute settings in a counselling role

I must say that the care I was given was excellent and that even in the issues highlighted above the staff were highly competent and I say just how much pressure they were under so would like to express my thanks to them.

After this difficult period I’m still left with questions as to why the diagnosis could not have been made in September since this was all the information that was available. I have to grudgingly accept that my sporting career is now over (this was to be my last year) and I did not get the opportunity to participate in a national final despite succeeding in securing a place there with my teammates. I’ve had to cancel a holiday and have been unable (so far) to claim the insurance as the diagnosis changed and it is now a very complicated matter.

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Response from John Hamilton, Head of Board Administration, Board Administration, NHS Greater Glasgow & Clyde We are preparing to make a change

Thank you for sharing your recent experience of services at the Royal Alexandra Hospital and the very helpful insight you have provided regarding how we can improve our communication with patients.

I am pleased to note your very complementary comments regarding the standard of clinical care provided to you, your kind comments regarding our staff and that in spite of some of the more negative aspects of your experience, you still took the time to express your gratitude for the care provided.

Whilst it is important that clinical staff fully explain all of the relevant information to patients regarding their clinical condition, they should always do so in a sensitive manner, recognising that each patient will respond differently in terms of how this information is received. I would hope that our staff would empathise with patients who are displaying feelings of anxiety regarding their clinical condition and take this into consideration during each consultation. This information should be conveyed without jargon and in a language that non medical professionals can easily understand without having to request further explanation.

I was disappointed to note that medical staff were discussing their experience of a particular procedure within earshot of a patient and would agree that this is neither acceptable nor professional. I can assure you that no member of staff would be asked to undertake a procedure that they were neither competent nor comfortable to undertake but appreciate how overhearing such a conversation would simply add to anxiety levels.

I would agree that it is particularly important to ensure that all steps in a patient’s care are fully explained including what investigations are required to establish a diagnosis and the intentions regarding management of the condition following the establishment of said diagnosis.

Good communications between clinical departments across NHS Greater Glasgow and Clyde is recognised as being vital and will be further improved with the development of our clinical portal providing electronic access to patient records as well as continued roll out of our trakcare patient management system.

It was also particularly disappointing to note that there was a lack of clarity regarding which services were to be running over the holiday weekend which caused further uncertainty regarding your care. This particular point will be made to our clinical teams to ensure better information on services to be provided is made available in the future.

I am sorry to note the impact your condition has had on both your sporting career and planned holiday and do hope that you have now made a full recovery.

I would once again like to thank you for your very detailed account which provides an extremely helpful insight into your experience as a patient and one which we intend to use as a learning opportunity for our medical staff with the aim of improving our communications in general.

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