Tag: hospital appointments

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Information overload

How do they expect patients to take so much information in at one time? Is it done that way so they can blame the patient when things go wrong and appointments are missed? Recently my husband had an afternoon admission for spinal injections. He was the first one in theatre because they wouldn’t sedate him. Don’t ask its a long complicated and frustrating situation. I would like to point out this was a private hospital appointment covered by my work’s insurance.

He was back in his room for less than ten minutes when his door became a revolving one. A nurse to check how he was feeling. Another lady asking if he wanted a some water. Then another to see if he was ready for some food. The nurse comes back to tell him he isn’t to get up without her being present.

His food arrives then the physio appears. The poor guy is trying to eat his food as he is hungry but she wants to ask questions. Up I step into carer role to provide her with information. Have you had these injections before? Do you have a history of back problems? I am trying to bite back the sarcasm. No he just thought it would be fun to have a consultant stick needles in his spine for no reason. Then wanting to scream at her to read his notes.

Are you here under medical insurance? Oh good heavens read the information in his file. Yes. I try to take the bite out of my response. Right so we will arrange a physio appointment. That wasn’t part of the approved treatment plan from the insurers. Call them I’m sure it will be fine if not it’s not that expensive… rude darling to assume we can afford it. So I hit back. Don’t bother booking us an appointment with the gentleman as he is useless. I didn’t have to say anymore. Oh OK. That alone told me lots.

She then stands beside me and reads me the information in the suggested exercises. It wasn’t quite finger under the words as she read but not far from it. Get him on the floor. I was having Deja-vu. These are the same exercises he has been given after every back procedure. I just let her talk, then she went off to book an appointment. One that we will cancel. She comes back and starts telling him what he can and can’t do.

Finally she leaves and husband say he needs the toilet. Not a nurse in sight. I go and find one. She stands and watches him get himself upright. I’m there helping him up and she doesn’t seem bothered. He walks to the toilet and comes back. OK you can get dressed. She leaves. Then another nurse appears and starts telling him what he can and can’t do. She tells us the information for his follow up appointment, all while I am helping him get dressed.

By this time my head is spinning. My information retention is usually pretty good but I have been given options for physio appointments and now I am questioning what is what. I know the follow up is in October and I know it is in the evening but that is the only information I retained. Another nurse appears with his discharge paperwork and tells us different time scales for recovery, rest periods after and suggestions for what he should do. To say I was confused would be an understatement. They were all reading from different pages.

All this took less than an hour from when he was back in his room. I have never felt so rushed before. How a patient could take all that information in I have no idea. My husband said he gave up listening. I failed miserably. Mind you there were a few different versions. I think we will listen to his body and I will make some calls when things have settled down. Ex

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Does the medication work?

Does your medication work? That certainly is a question to ponder. I guess asking that can open a can of worms but hey lets do it. Now where should we start? We get a prescription and we know what the drug is supposed to do, help with or prevent. If the drug is for something simple… clearing up an infection. That is easy. Infection has gone. the drug did what it was prescribed to do. Happy days.

Some drugs you can see the work that they do. The swelling has gone down. The itching has stopped. Others the work is hidden but you can tell it is happening. The heart rate is right, the blood pressure lower. You no longer have palpitations. The dizzy spells have stopped. Sometimes you have to wait a while for the effects to become apparent. The dose may need a tweak or two to get it to work but what if it doesn’t?

We have had a few appointments recently. As is the way you get chatting to people. One comment surprised me. My husband was talking to a nurse who was conducting pre-admission tests. She spotted his tremor in his arm and asked if he has Parkinson’s and was he on medication. He said yes but I’m not sure its working. She replied ‘I don’t think it is for my Dad either.’

He has been on medication for months and it has been increased once but I can’t say I have seen any indication it makes a difference. Now obviously without it he could be worse. We don’t know that. My husband says he doesn’t feel like it is helping. In fact he has other problems that we are beginning to question if they are linked. So what do you do?

Does medication work. Can relaxation help

How long do you give a drug time to work? Time to make a difference? How many times do you up the dosage? When do you ask if there is an alternative? Each adjustment is then followed by a six month wait for the next appointment. That is a long time to wait for a drug to work. How many six month cycles does he have left until we get told, sorry there is nothing we can do? In that time we have been buffering, waiting for things to improve. Not fully living because it is not helping in the way they say it will.

The whole process feels like a barrel load of ‘how long is a bit of string’ questions mixed with a need for a crystal ball sprinkled with a handful of ‘what ifs.’ Should you trust the process? Keep your fingers crossed that suddenly the drug will work? I haven’t reached out to our Parkinson’s nurse as her last comment about ‘not being bothered to adjust our lives to fit the drug’ doesn’t fill me with confidence. We have another appointment soon so we need to decide what to do? Well I don’t because it is not my call to make.

Sometimes I don’t notice his tremor. I’m not sure if that is because I have got used to it. Other times it is so apparent. That is usually when he is stressed. I haven’t notice his lip tremble recently but he says he feels it more. Before this next appointment we are starting new medication for another issue that we have been waiting for for eighteen months. Will that work?

It would be nice to know what to do for the best. You can only go by advice and how you feel. A little improvement. A sign we are heading down the right path. Something would be nice. Lets keep our fingers crossed that something starts to work. Ex

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Does anyone have a clue?

Can someone give me a clue? Devine intervention? A massive sign? No? OK in that case any chance someone can point me in the right direction and quickly because I need information. Information that seems to be lost somewhere in the pits of ‘nobody knows.’

I am at my wits end. You might have guess that already. Let me explain. That new consultant that we crossed paths with who arranged a scan and realised there was something that needed looking at. Well we went back and got the scan results. I will admit I didn’t have a clue what I was looking at but then I was peaking round the side of his screen. So it seems husbands back has deteriorated but we expected that.

Three options were laid before us. Physio – Lowry man (that will only make sense if you have read my book), spinal injections or surgery. There is no guarantee that the injections will prevent the need for surgery but it might delay it. I knew husbands choice. Lets go for door B. Within a matter of minutes we were given a day admission date and details for the insurance company. All good so far.

Two days later husband gets a call. They are supposed to reach out to me but from what husband said this person didn’t have a clue what they were doing. She starts asking for his back history, all of which I filled in via their online form which I was told we had to submit before the first consultation. I still have no clue what happens to that information as no one seems to get it.

Can I hide behind this door until someone has a clue what is going on

She then tells him he can’t have the procedure done and he needs to start the process again via the NHS. Deep breath and don’t swear. Then she says he can have it done but they will only do it under local because of his prior anaphylaxis and the fact he doesn’t have an epi-pen. I have tried to get him one but have been advised he isn’t allergic enough. Yet the allergy specialist said even a small dose will kill him before anyone would reach him. Again does anyone have a clue as to who is right here.

Then she tells him he has this aliment. No I don’t. You are taking this mediation so you have. The medication was prescribed for something different as it can be used for both and I doubled checked his medical notes and the diagnosis she says he had is not showing. The conversation then goes on about his need to fast. First it was yes he did, then at the end of the call, no he didn’t. By this point I had no clue. Hubby was confused as anything and I was even more frustrated.

After he relayed all the conversations. He had no idea. Should he take his tablets. Was he supposed to eat, was he not? He had no clue. I had no clue and the woman from the hospital well I don’t think she had any idea at all. What grated me most was the medication for his Parkinsons hadn’t even been mentioned. Because of the time of his admission what were we supposed to do about that?

So this morning I have been talking to the consultants secretary to get clarification. I now know what we are supposed to do but I feel sorry for the people who don’t have a clue or a full grasp on their situation. One call from a person who doesn’t have all the information and it can all go horribly wrong. No body needs that. Ex

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So much admin

Admin! That word never used to make me scream but at the moment it is being moved into the same bracket as ‘health and safety’ a certain telecommunications company and cold callers. Why? Simply because it is becoming frustrating and annoying.

I’ve always considered myself competent when it comes to admin. There is a lot of it in my job and I will admit that with the progression of technology some of that pressure has eased. The processes have become easier. Please do not think I am talking about AI because I am not. Software packages that have reduced my data entry are amazing. Yet for other parts of life the opposite seems to be true.

Recently after a GP appointment my husband was given a referral letter. Having gone through this process several times we waited for an appointment. Nothing. It now seems we have to take the referral and do the work to get the appointment. At what point was someone going to tell us this. More admin for me. Check out the possible consultants because his usual consultant has vanished. Check with the private insurance company that the one we pick is on their list. Make our choice, get it authorised, book the appointment.

Another clinic said he needed bloods and an X-ray. OK log on book the blood test, my job as husband can’t use a computer. Where has the paperwork for the X-ray been sent? Thankfully it only took a couple of calls to track that down and confirm it can been done during the same visit to the hospital for the bloods.

My response to admin

The paperwork I have in relation to my husband is behaving like that Gremlin who was fed after midnight. My current folder will now need to be split as it is busting at the seams. In that simple task is an admin dilemma. How do you decide which sections to group together? I know from experience which ever way I do it, the question I get asked will have the answer in the other file. We won’t mention it is information that should be held in his medical records. That is another gripe altogether.

For the appointment for the referral I think it best if I step up my admin and put together a specific folder as from experience usually a new consultant means a whole load of pain starting from scratch. Better I go armed with all the information as I know full well that lovely screen on his desk, linked to that big ole computer will not tell him anything relevant. I’m not sure it tells him anything correct.

It’s hard work, another ball that we shouldn’t really need to be juggling. I’m trying to figure out if these are problems due to people not doing their jobs properly, people not caring or the systems being upgraded ineffectively. Failsafe procedures not being put in place or perhaps this is just a way to reduce the figures.

Yes I sound cynical but I don’t understand why admin is being pushed onto the patient. How far will this go? Will we eventually be responsible for generating our own discharge papers? That might be beneficial as in my husbands case there never seems to be anyone to sign them.

I do fear for the people who are dire with paperwork. Perhaps we need to hire a PA when we get sick. I know that if the boot was on the other foot I would be doomed: husband is not an admin demon. His theory is shred it, we won’t need it. My suggestion is brush up on your office admin skills, you never know when you will need them. Just don’t ask me, I’m drowning under paperwork. Ex

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Is it wrong to expect the basics?

I some times wonder if I expect too much. I mean I think I’m only asking for the basics. Manners, curtesy, punctuality and people to do a proper job. The job they are there to do. And therein is the rub. That today seems to be too much to ask.

So after the debacle of being missed off the system upgrade which saw us waiting nearly a year for results. We needed to start the process again. Now those of you who have been with me since the start would have probably groaned and asked what happened. You would be right to. Only us. A sigh and an eye roll.

We did the long round trip to the hospital for bloods and X-rays so we could get back into the process of applying for funding. Then we get the phone call from the consultant. You need to come back. They didn’t do the all the blood tests required. Seriously? How? Why? You need to come in Monday… oh wait that is a bank holiday. It will have to be Wednesday before midday or we will need to start over.

Was it that the person didn’t take enough blood or was it the person who ran the tests didn’t do the right ones? Is expecting that to be right above the basics? I get that mistakes get made but reading and double checking for me is the basics of a process. Protocols should be in place to make sure this is the case.

Sod’s law there was another appointment on the Wednesday so we had to reschedule that and head off early to get to the hospital. We can’t book a blood test appointment as the earliest one is five weeks time. To queue jump we have to get to see the consultant between his appointments so he can talk to the phlebotomy department.

We get to the hospital and the consultant isn’t there. Lets hope he has done the basics and left details in the clinic so someone can help us out. Another consultant appears and gets the ball rolling. My husband laughs at me as I pay attention. Being nosy some might call it. A conversation caught my ear. A senior member of nursing staff offered to take us into a clinic and draw the bloods so we didn’t have to wait about as the blood department would need to squeeze us in. He said no.

I was not happy. I couldn’t say anything as I was listening to a conversation that was not meant for my ears. The consultant said the department had missed off the two main tests so they needed to get it right. Was that about budgets, costing and funds? Possibly. The red tape of the hospital above the basics expected by the patient. Frustrating for sure.

Luckily they took the bloods and we were on our way home in just under an hour but do we think the basics will be covered again this time. No. husband said the paperwork was the same from last time. So we need to keep our fingers crossed that someone does their job properly. Maybe it is delaying tactics. I promise if there is a problem with this lot of bloods and we get called back again the air will be blue. I’m only asking for the basics and that isn’t too much to ask… is it? Ex

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New Consultant

I wonder how you feel about having a new consultant? If you are in the position to choose do you stick with who you know or do you shake it up and try a new opinion. I suppose it can come down to more than one factor. Personal choice. Prior experience. Circumstances. Even simple personal interaction: do you and the consultant gel? Some times that choice is out of your hands and you have no option than to roll with it.

On the whole, me personally, I like consistency. The security and comfort of knowing who I am dealing with especially if it’s a consultant who I feel has helped us move our situation forward. It also feels like there has been an investment of time building up the relationship. Setting the foundations for the care plan, you know the long term path you are going to be on for this particular health issue.

The consultant who you have dealt with numerous times before should know your history. The allergies that can kill you. The pain relief that is more effective for you. Drugs which make you sick. Your quirks, fears and the avenues you have tried which have not been successful. All of this makes your appointments more productive and less stressful.

A new consultant to me feels like a massive step back. Well you are starting a relationship from square one. They don’t know your history. Prior surgeries. When they ask details about the prior procedure and you aren’t totally sure but the doctor that had been sat in the chair before knew exactly because he had preformed the operation.

Sure we have been in the position when appointments with one consultant felt like a constant circle of tests, new drugs then radio silence to then have to start again. In that position we were close to asking for someone new. Luckily that happened without our input and the person who took over we had seen in the clinic previously so it didn’t feel like a complete reset.

So here we were needing to start a process again. An issue that has been ongoing for numerous years was back. Two prior surgeries had seen the problem, I won’t say vanish, but be manageable. However now things were getting bad again. The last time this happened the old consultant who had carried out the last operation assured us nothing had changed but we weren’t convinced. We didn’t ask for a second opinion but found a way to manage. Now that wasn’t an option.

A GP referral and authorisation from the private medical insurance had us facing the decision. Do we stick with what we know or do we start from scratch. As it happened the option was taken from us. The old consultant wasn’t on the list of people we could see. We were given two names and one wasn’t available. Door number two it was.

We walked into the appointment, a few questions later and less than a minute of ‘can you do this.’ and the consultant sits down and says you are in a bad way we need to see what is going on in there. Wow… no barrage of questions. No detailed history. Simple observation of the patients movement, posture and wincing and we have taken a bigger step forward than I was expecting. He writes on a piece of paper. Go and book this test, then book this appointment. I want to see you back here in two weeks.

So now we have a short wait to find out what is going on. Its a little more than two weeks as we couldn’t get the scan. Here’s hoping he keeps the momentum up. Ex

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The Power of a Letter

What would you say is more effective, a telephone call, an email or a letter? In these days of technology, instant messages and online chat you would think that to get anything done a letter would be ineffective. Redundant. Obsolete. Well let me tell you I think it is still the most powerful and efficient tool at our disposal.

Over the last several years I have come to realize that modern technology is great when the system is working properly. If there are no bugs. It’s not overloaded and the people using it are good at their jobs. The information loaded on the big PC is current and regularly updated then wonderful. Online is the way to go.

We are advised that to contact a department you leave a message. Send an email, you might want to attach a letter to that mail. Log on to that wonderful app they have said it is imperative to have and you will find the information you need. Someone will get back to you. Its all there. Everything is easy and fast. I call bull!

A year, well almost, we waited for test results. An application for funding for treatment was going to be made and we would hear back in three months as to what was going to happen. Tumbleweed. Radio silence. We reach out. Leave a message. Ask for updates. Complete a questionnaire to ensure we are still on the waiting list… and nothing.

The GP was no help. It takes time. The department is over stretched. They are busy. They will get to you? But how long do you wait? Is a year not long enough? Can you chase them us for us. See if you can get the results. An indication as to where we are at? No! Well thanks for that.

I sit. I stew. Someone else in my life stirs up some brown smelly stuff: unrelated but it pokes the bear. Enough is enough. Time to start making waves. The laptop gets powered up and my sarcastic mode has engaged. Letters to various companies penned then comes the hospital. Now I am never rude. My language maybe colourful in my head as I am composing the letter but what goes into print is polite.

Bingo. A response a few days later. Oh sorry. We installed a new system and you fell through the cracks. Seriously? How many patients did they ‘remove’ from the waiting list by shoving them down that crack. Was it in fact a version of the Grand Canyon? My husband must be the unluckiest person as this is not the first time a new system saw him being forgotten or misplaced. How can that happen so often?

So now we have to redo some of those tests. The application for funding will be submitted as that never happened. Once the results are back, if the funding is approved we can move forward. We have been given a telephone number to call if we have a problem. Now why is that? A different number. Direct contact? Is this a way to keep us quiet for a while longer?

Three months is what I will give them. Then one call to that new number. If that gets no response I will stick to my trusted letter. Effective. Powerful and satisfying. The old ways still have their uses. So if you find that you are not getting a response from a department. Try a letter. It might surprise you. For a little more effort it seems to get a lot more results. Maybe the old ways still have their place in todays world. It works for me. Ex

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Being fobbed off!

Don’t get fobbed off. A phrase I have used, possibly more times that I should have and recently it was said to us. I had to smile. Sure we all like to think we can stand our ground, ask to be listened to but do we actually get heard. I actually fear that we don’t. It’s more like we are patted on the head like a small child with the hopes we will shut up and go away.

Since we were giving the initial Parkinson’s diagnosis in January 2024, looking back, we have been fobbed off quite a lot. This is hasn’t gone unnoticed but it has been quietly accepted as ‘just the way it is.’ Well maybe not quietly, there have been some expletives used. It is just not right, in fact it’s positively disgraceful. The passing of the buck has got to epic proportions. So when we feel we are being fobbed off what can we do about it?

This started for us way before this diagnosis. It’s prevalent when you are under more than one department and the conditions can be linked. The back surgeon tells you its your hip, the hip specialist tells you it’s your back causing the problem. Then you get a new issue and the two of them rub their hands together and put the onus on the rheumatology consultant. It’s being fobbed off as a tag team event.

Now we throw Parkinson’s into the mix and well tag it’s all linked to that. Sadly I expected that and well the consultants didn’t disappoint. It felt like it was, we’ll he has Parkinson’s so it is to be expected. There is the ‘get out of jail free’ card. We can discharge you from our clinic and make our numbers look better. Majorly fobbed off!

I'll just sit here and wait to be fobbed off again

When we were going through the symptoms with the new Parkinson’s consultant and we mentioned everything being linked to this she smiled, nodded and stayed silent. I got the feeling she has heard that more times that she would like. It must be so frustrating from her position. She then put husband through a load of mobility tests. Boy did she get a work out, moving him about. Sitting back down she typed away then sat back, looked at us and smiled.

You have a tremor based Parkinson’s, this is good news. At this time it is not affecting your walking as you have no shuffling, freezing or stooping. The symptoms you have described are not down to Parkinson’s. Its more likely arthritis based so do not get fobbed off when they tell you they are not. When is your next appointment? No idea. We haven’t heard anything for nearly a year. I would swear there was an internal eye roll.

Hearing her tell us not to get fobbed off pretty much had me grinning. It was refreshing to hear someone being so assertive. We have got so used to ‘well it could be,’ or ‘it’s more likely to be.’ We left there feeling a tad more positive and with a prescription for the increase in medication. The letter regarding the appointment was with us later that night. She is nothing if not efficient.

So where do we go now? Back to waiting for appointments from the other clinical departments. I am not going to hold my breath for anything in the near future. Then back to to this clinic in six months. Hopefully the medication will have started to have an effect. It’s all a waiting game. Something my husband is not good at. I’ll just have to find him chores to keep him occupied. Ex

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Open to Interpretation

Interpretation on the whole makes me smile. I love how people can use it to justify how they do things. Their way is correct and anything else is wrong. It might not be but that is how they see it. That’s why life is interesting. You and I can read the same thing and take it to mean different things. It opens the door to debate. I think it’s a good thing; a great way to learn.

Yet interpretation can be so extremely frustrating. When I was at school it was something a couple of my teachers drilled into me. One teacher said that my answer might not be correct according to the set answers but if you explain your interpretation of the question to back up how you got to your answer it can’t be marked as incorrect. That lesson has proved useful more than once.

Recently we had our first meeting with our specialist Parkinson’s consultant. This, it turned out, was a new clinic that was being set up so there were a few teething problems. Both the consultant and nurse were lovely. Both explaining that things may take a little longer while the system is getting up on it’s feet. Not a problem. Hiccups are to be expected with these things.

We go through all the back ground information and set the groundwork for his record. Then we start talking about medication. I will hold my hand up and say I expected to have the same conversation with the consultant as I’d had with the Parkinson’s nurse earlier in the week but I was pleasantly surprised.

She asked husband how he was getting on with the tablets. Had he experienced the nausea he had been warned about? Thankfully not but he mentioned the rigid times he had been given in the letter from our first appointment with the nurse and how it wasn’t fitting in with everyday life. The consultant listened to his concerns then smiled. That is a very exact interpretation of the use of the medication but there is wiggle room.

The path of life is open to interpretation

I am pretty sure we both let out a sigh of relief. You fit the medication into your life, you don’t change your life to fit the medication. The days you are starting earlier, if you feel you need an additional tablet at the end of the day, have one. You don’t have to eat exactly thirty minutes after taking your tablet just as long as it is after half an hour. If it’s an hour or more it’s not a problem.

The local nurse had given us her interpretation of the guidelines for getting the best from the medication. It was rigid and set in stone. The last discussion I had with her made me feel like it was this way or nothing. If you can’t change to fit the medication into your life there is no point you taking it. Wow I’m sure the employers of everyone who works while on this medication are going to be really accommodating to this regime… not!

The consultants interpretation was much more relaxed. This is the ideal set up but life isn’t ideal so we do the best we can to get the best from the tablets without tying your hands. You don’t need to get up as early at the weekends. As a rule of thumb you need to allow about four to five hours between each tablet. Thank you this we can work with. The nurse’s interpretation would have either seen me missing dinner four nights a week or looking for alternative employment. I think the diet would have won.

I suppose it goes to show that sometimes a second opinion or view point is beneficial. Life isn’t set in stone and interpretation should always allow for a little wiggle room. Ex

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Third Time Lucky?

Do you believe in the power of three? The old sayings of ‘third time lucky’ or ‘things run in threes’? I can’t say I run my life by it, but the things running in threes certainly seems to happen in my life. Usually the poop stuff. So can I put any weight in hoping that the third time is a charm?

Completely out of the blue we had two appointments arrive from the cardiology department. We knew the path we were on going forward, but using the previous time lines as a yard stick, I don’t think either of us was expecting these appointments until the start of next year. One is for more tests prior to an admission for a procedure. That special number three.

Husband reading the letter looked at me and said ‘This is the last time. If it doesn’t work this time I am not keeping going through this.’ I understand where he is coming from and it is completely his decision. On this I will not fight him. The prior two procedures have not been a resounding success. In all honesty, between them, they solved his issue for a grand total of one whole month. For me the last one was horrendous as I could hear everything. The urge to barge into the theatre was overwhelming.

Is there any more chance that this time will be any more successful? Apart from the third time being a charm that is? Well this time he has been on tablets for a good few months, and these are supposed to make the outcome more favourable. Favourable but not guaranteed. There are other options going forward that are considered after this procedure but that is a path we have also trodden.

Third time is a charm so we can walk here again

That was more successful. It was a more invasive procedure. Apparently not a pleasant one from my husbands tales. Lets just say he used the phrase brain freeze and one hundred times worse. I don’t know about you but that does not sound appealing. When we discussed this alternative with the consultant and we mentioned that last time it lasted eighteen months. His reply astounded me. Anything over a year is considered a success.

Wow, a year is a success. Not setting the bar very high in my eyes. That said, it is a condition that many of us have that goes undetected and has little impact on our lives. So unless it is debilitating does it really need to be corrected? Will husband go for option two again if the third time is not a charm? I think it would be a reluctant decision.

So for now I am keeping my fingers crossed that the outcome, if not favourable, at least lasts longer than a month. Then we will have to sit down with the consultant and see which path husband wants to take. There is always the medication option with all the wonderful side effects. I know my husbands concerns and he will ask my views but as it should be the final choice will be his. I think I know the option he would like but whether that is tabled by the consultant is yet to be seen.

All I can do is be quietly supportive. Offer my opinion when asked and hope the third time will be the charm. A silent prayer may not go amiss, not that I am religious but I have yet to find a four leaf clover. A little bit of positive mental attitude can’t hurt either. My husband is more of a what will be will be person. Gosh I wish I could be more like that. So here is hoping what will be, will be successful. E x