After a real horrible summer, I suspect I need to get going again on the lighthouse pages etc. and here too. So let me start with my "essay" about the adventures of a hip replacement. This was written in frustration. But then I sent it, together with a letter of complaint, to the various organisations involved. So here goes:

The Adventures of a Hip Replacement

Time period May 2015 to probably September 2015 (at the time of writing this I am not discharged as yet and so things are still going on)

This is the short version of an – in parts – endlessly long winded story of a fantastic operation with an inordinate amount of issues around it that should NEVER have happened!

So this is what happened:

 I finally got an x-ray in February 2015 when it became that the hip needed replacing.

So my GP-surgery referred me to the muscolo-skeletal clinic in Clevedon. Approx. 10 miles up the motorway – good job I have a car and can drive at this stage, but disabled parking at that hospital is more than inadequate and what do folk do who don’t have cars?

The gentleman at the clinic was amazingly helpful and referred me straight away for surgery.  I opted for going to Weston-Super-Mare, because my husband won’t be able to drive anywhere further away. In any case my husband is  85, willing to help, but his ability is seriously hampered by the fact that he has no balance at all and stumbles and falls often. He can drive, but not very well or very far. And just after I got to driving again, he was told he should really not be driving at all.

So now the waiting game starts. The offer of an earlier appointment at Emmerson Green can’t be taken serious. I did make clear I wanted Weston-Super-Mare, because my husband can’t drive very well and Weston General is on his limit. So this offer was a waste of time. Emmerson Green is just too far away.

Then I get an appointment for the Occupational Therapy, where I am supposed to be taught how to behave after the operation. Well very basically at least that happens. Then I was given a thing to put socks on, which when I was trying it didn’t really work well at all. So no socks until I can get back down to my foot, also a grabber which is priceless and will be useful for a long time to come. And I was given a raised seat for the toilet, which is filthy and does not fit.

So I get in touch with the Motex Centre where there is another OT, who is prepared to come and have a look, which she does. She gives me a new seat, which fits and tells me to dispose of the other one. Why do I have to organise this?  

The next thing is an appointment with an orthopaedic hip surgeon. He is with a student (which I don’t mind at all), but also in a hurry and no time to really answer questions, if I had been able to think of any in this hurry. A phone call from appointments later suggests, there is a new surgeon, who will have capacity much quicker than the original one and would I be agreeable to going on this guy’s list. Well of course!

So, on the 18^th of May I go for the assessment/pre op and meet the new surgeon Mr. Odutola. Great so far! I seem to get on with this guy and he seems nice and confident! During the tests (blood, ECG etc.) I get called by the appointments team. There is an op appointment for the 28^th of May and did I want that. Well of course I do!

On the 28^th of May 2015 I come to hospital. I was asked to be there at 12 o’clock. And I was half an hour early. Booked in with the reception desk, but that wasn’t communicated to the nurse who then was really surprised to see me when I stuck my head out of the door. She didn’t even once check if there was anyone in the waiting room … so the pre-op procedure does not start until 12:30, when I am seen by the anesthetist.

There are an unbelievable amount of forms to be filled in by hand by different people; all in different colours and all just about asking the same questions. And at about 2 PM the theatre nurse starts hovering and waiting for this paper war to finish. Has anyone ever heard of computer databases, where you can enter the pertinent information once and then everyone can extract the information they need? I shudder to think what this all costs, bearing in mind that some data entry clerk has then got to enter it all into the computer after all and all this time needs paying for.

The operation seems to have gone great. I wake up and get taken to the ward and wake up there again. Following morning – after a night’s worth of interrupted sleep “do you want a bed pan?” – I insist on the commode – I know my body and know only that will work. While on there, the surgeon came flying in on his ward round “Hello, are you OK?” “yes thank you” I was a bit embarrassed because I was more or less naked as I was also going to have a little wash and there was very little room, because the curtains were drawn round the bed, and on top of all that I was still groggy from the anesthetics. So the whole meeting was far from perfect. I guess Mr. Odutola felt the same and he just said “OK, see you later then” and vanished.

From lunch time on Friday (day after the op.) I do most everything for myself – including walking to the bathroom etc. and I must say I am impressed how little pain there is from the joint. Just the amazingly extensive bruising hurts, but that is to be expected or so I thought.

So on Sunday the rumours of my impending discharge start. Well, I refuse to go, because I have not seen anyone to talk to about the success or otherwise of the op and about what is happening about the injections into my shoulder (steroids to help with the pain of the arthritis - since I now have to use walking aids - which had been discussed before the op, but postponed until at least after)?

So on Monday June 1^st - boy what a chaos on the ward. Lots of noises, cleaners everywhere, ward rounds for everyone except me. And we are all worn out after the sleepless nights with the poor lady in the bed across from me, screaming in pain (but that is a different issue!).  The surgeon is being bleeped, but does not respond or at least that’s what they tell me. So in the end I get to talk to a guy called Raj, who is obviously “in the know”. He suggests that an appointment is made in 14 days for the surgeon to take out my clips/staples and at the same time see about the injections into my shoulders. That is an acceptable compromise and so I agree to discharge and subsequently I receive that appointment.

Now for the first really serious issue: The discharge procedure is outrageous!

I have to fight to get my own medicines back. They had been locked away in two different cupboards because the morphine is controlled and needs to be especially locked away. Then I have to ask to have my dressing changed (???)

And then a very nice lady takes me to what is called “Discharge LOUNGE” … well what a joke. A misnomer, if ever I heard one. “Lounge” indeed???  A bus station waiting room is about the size of it. A collection of chairs all around the outside of the room, some occupied, TV blearing in the corner, the floor is “council special grey” and not very cosy and it is not very warm, either in temperature or in atmosphere. But it is staffed with amazingly friendly and helpful ladies – I don’t think I ever had a cup of tea as quickly in front of me. The problem is that there is no chair suitable for me. According to the OT I need one 17 ½ inches high for my joint integrity and there is none free like that.  So … why do I have to wait here? Well, because the discharge meds are not ready. And when the ladies are trying to find out how long it will take, they are told that the pharmacy has not even received the script for them yet. That is astonishing when you think that they were going to discharge me the day before!!!

I am told that with past experience the wait could be 7 hours. Well I can’t sit on such an unsuitable chair in such an unsuitable room for that long. So the arrangement is made that I am to go home and they will call me when the meds are ready, so I can then send someone to pick them up. That seems reasonable and so I go home!

BUT the phone call never happens. No discharge meds. So the next day I return to the hospital. The pharmacy is not very helpful, if not to say downright rude and I get sent to the “inpatient pharmacy”, which is not much better. But still eventually at my insistence, they find out that the meds are on Steepholme Ward. “Well that’s where you are being discharged from” No, that’s where I WAS discharged from yesterday and anyway that they had palmed me off to the discharge lounge!  So five days post op I have to walk through the hospital back to the ward to finally be given my meds.

OK, so home I go again to start a successful recovery at home. At least that’s what I thought.

  I decide to contact P.A.L.S. to let them know what I thought of this discharge procedure. Since it is easiest for me, I email them and receive one email to say they had passed that on the manager of the discharge lounge. I reply that I think that not fair on her. How was she to do anything about the ward not being prepared enough (they should have had my prescription ready!) and how was she to do anything about the pharmacy claiming they need 7 hours? And I bet she didn’t ask for this abysmal motley crew of chairs in her lounge.

To date I have not heard anything further about this complaint from P.A.L.S. or anyone else.

Now I have to arrange dressing changes. Again, why do I have to do this? And how I am supposed to get to my GP surgery, since I can’t drive and my husband shouldn’t? Is anyone even remotely interested in weather I can do this or not? Does not seem like that.  At least the question is never asked.

Bearing in mind that my husband – at nearly 85 – does not drive that well (and shouldn’t drive, we found out since)  and I am not allowed to drive for six weeks post-op,  I am trying to get stuff organised without him having to take me anywhere. My GP surgery’s receptionist therefore suggests the district nurse should come on Friday, which the surgery will arrange, to do the first change and then I could arrange with the nurse any further dressing changes if more are needed. That seems reasonable.

Friday comes, but no nurse by tea time. So I call Care Connect, who give me the number of the nurse’s service connected to my GP surgery (Knightstone Community Team) and get an answerphone. OK … I tell them what I need, but nobody calls back. And since my dressing is by now in a bit of a state and I don’t want an infection, we change the dressing ourselves.   

At 21:15 ... yes quarter past 9 PM … the doorbell goes and there is an emergency district nurse, who apparently was called out by me. All I did was a phone to find out why the nurse I was waiting for never came.     Anyway, she checks the dressing and gives it the thumbs up.

She suggests that she will organise a nurse for Tuesday morning and Friday morning next week. That should get me through to Monday (15^th of June when I see my consultant) and then we can see how we go on.

Well Tuesday comes and again no nurse. I call, get answer phone again and all but give up hope.  Well eventually in the very late afternoon, someone calls, tells me they are too stretched and they won’t be able to come until at least Wednesday. And then she tells me in not too friendly a tone, I am to wait in for this nurse, as they are supposed to be only for the house-bound and are not able to tell me even if they are coming morning or afternoon.  I tell them not to bother. We managed to change the dressing once, we can do it again.

But on Wednesday morning there is a nurse to change my dressing. When I ask her what it looks like she is impressed and suggests, since I can’t turn enough to see it, she’d take a picture. The picture shows a great really clean scar and no problems. So:  happy patient!  We decide there is no need for a further change before Monday, since everything is closed up and no bleeding or seeping anywhere.

BUT THEN … … …

The day after the dressing change, Thursday 11th June, in the morning I am walking a little bit with my dog on the beach lawns. After all I was told to walk and it has been two weeks since the op and I feel great. So I am longing for a little fresh air. I walked about 150 yards, with my walker (rollator), when I felt a warm liquid run down my leg. The friend I was with got really scared, poor lady.

Turns out I was bleeding thick, deep dark obviously old blood – good job my trousers were the same colour or I would have frightened several folk really badly with all that blood. Quickly we went home, quickly stripped off and found the scar was bleeding at the top. Called the GP surgery, was advised to call 999 and did so.

The ambulance came in about 5 minutes. But the two ambulance guys were helpless. They seem to have no clue what was going on or what to do about it. There wasn’t even any absorbent material available on the ambulance to soak up all that blood. WHAT???

They phoned all over the place for advice and eventually an Emergency Paramedic came and spent 1 ½ hours prodding and poking and managed to slow the bleed to a very slow trickle. So he left. Here I am with no pads and no bandages, just one wound pack that the paramedic had forgotten.

Shouldn’t they have taken me to A&E? Well I think so, but I overheard the ambulance staff on my landing talking to the paramedic, saying that they had been instructed to do their utmost not to bring anyone to A&E. Firstly, what kind of instruction is that? And secondly, if you must talk about instructions like that, maybe you should make sure the patient can’t hear you?

Result: they left me without the means to cope with the blood, still bleeding, to my own devices.

Because I am now really left to my own devices, with no solution or dressing materials, I called the GP surgery and spoke to the one nurse on duty. She couldn’t help because of some rules and regulations apparently not allowing her to get involved with situations outside the surgery, but said if I needed further help the next day, to call her and she’d try and find help.  

A reasonable night’s sleep later I got up and walked to the car and … here we go again … thick deep dark blood running down my leg.  This time it was much harder to get help. If it wasn’t for my neighbour, who was a nurse and had some incontinence pads, I have no idea what we would have done. The toilet paper we were using to try and stem the blood flow, just wasn’t cutting it. I mean the conti-pads were also not really the right things to use, but marginally better than nothing.

Phoning round GP (no help), district nurses (no help) GP again, trying to get hold of the nurse who yesterday promised to help, but the receptionist is shielding her so I can’t get through. So … call the emergency district nurses again.

A really long time later, an emergency nurse finally comes and she finally gets through to the Orthopaedic nurse at the hospital. I had been unsuccessful with that. That nurse suggests to call an ambulance and to go to A&E.

Nearly FOUR hours later that ambulance finally arrives. The bleeding had started again at 11:30 AM and it is now 18:00 PM.

I am taken to A&E spend what seemed AGES waiting around on a very uncomfortable chair and my fusion site (I had lower back spinal fusion in 1987 which I told the receiving nurse about) is getting really painful by now. But other than a glass of water, I can’t seem to expect any help.  I made clear I had not eaten all day (I wasn’t sure what kind of procedure I was going to be subjected to and I didn’t want to have to wait for my stomach to empty first) but that did not seem to interest anyone. And neither did the fact that I was in no state to walk to where ever I could buy anything eatable - bearing in mind I am still bleeding at this stage.

I have also made repeatedly very clear that I am allergic to many sticky plasters and requested that they please use either the hydro-film that was used post-op or at least mefix, which I have always been able to tolerate.

The emergency doctor, Kerry, after speaking to the Orthopaedic Registrar (no idea which one), tells me “let it bleed, the hematoma needs to empty” and she tells me she will instruct a nurse to do a dressing and give me some padding and suitable spare dressings to take home.

An hour later and only after I finally rang for help, the nurse comes and dresses my wound using “op site”   I get a part- box of it to take home, but no absorbent pads. The op-sites dressing sees to it that I react allergic in a really bad way and the dressing is irritating rather badly. I end up with a number of thumb sized blisters all-round the original wound, which make dressing that a real problem at times.

Well home I go. Next morning … well what else … it is bleeding again.

AAARRRRGGGHHH … So I ring the emergency district nurse. And finally I get someone who seemingly wants to be constructively helpful! She comes with a bag full of dressings and wound pads and dresses the wound using some of MY mefix tape and one of her wound pads. She uses my tape, because all she has is flimsy surgical tape which won’t even stick.

Anyway, the supplies mean that we can look after this until Monday – if barely. Only I have to now hunt for some more tape, since the surgical tape the nurse left me, is not sticking too well. Off we go to Boots and buy some …

Well … at least I will last until the appointment with the surgeon now. I am just praying that he …

·         … is there himself

·         … has enough time

·         … has the supplies needed

·         … is able to solve the problem in a lasting manner

So there you go so far … nothing else can go wrong, can it? The surgeon on Monday will have a bit of a surprise and – I am sorry – but a piece of my mind to pass on to whoever needs to hear this! I hope he knows better who needs this than I do …  

The surgeon was there, he did take the time, his nurse had the supplies and they removed the clips. But there is no solution in a lasting manner. Two days later I wake up bleeding again …. And I feel terrible. Yes I have the technical wherewithal to cope with bleeding for now, but emotionally I am now a wreck. On the whole I am a strong woman and I do hold things together easily. But this is getting so wearing. Just when I thought I was “on the up” I am knocked back down with a bang.

My house looks like a tip. It needs cleaning and a lot of laundry needs doing – we are running out of clean clothes. So I HAVE to get going and do stuff, but I aggravate the bleeding every time I move and so it’ll prolong the agony. But then who else is going to do what needs doing? I know I should rest  and recover, but I need to cook dinner, clean house and do the laundry. There is no relatives anywhere near enough to help (nearest family is in Wales) and I can’t ask my friends for more favours. They have already gone above and beyond anything I can ask of them. Of course at no stage of all of this, has anyone asked if I am coping or if I need any help, despite everyone knowing that I am living with an elderly husband, who is doing his best, but has his limitations and can’t do a lot of what needs doing.

Three weeks post op. … Saturday morning (20^th June) … We have been out and had a lovely breakfast for father’s day with hubby’s son and family. And because I am no help, hubby’s son helps him with the garage door frame. While sitting still on the sofa, I feel a trickle, run upstairs and find yet another part of the scar is now leaking. This time the liquid looks different. It is clear fluid with a little blood mixed in.

Well I have no choice, I call the out of hours nurses again and one comes quickly. She re-dresses the wound and then goes back to her office to fetch some absorbent pads and some hydro-film – since by now that is all I can tolerate on my skin after the horrid stuff the A&E guys used and which made me react so badly.

OK so I can cope, but I am not really happy.

On Monday I call the number my surgeon has given me “If you have any kind of a problem” and his secretary is sure I had better come in and have this wound looked at. She makes me an appointment and my friend and neighbour kindly drives me in!

The registrar that sees me (Adam?), takes one look at the wound (can’t call it scar any more) and says: You will be admitted at once. And then he starts a quick and longish conversation with the consultant he has called in to have a look at the wound and with the nurse.

At this point I lose the plot a little: “Someone talk to me!” And they explain that there seems to be an infection and that it needs cleaning out and operating on a.s.a.p. – I end in tears, because they won’t even let me go to pick up a few things and tell my husband.

Thank god for my friend! She goes off and leaves me to have all the x-rays and blood tests etc. and she will inform my husband, bring him to visit. The only good thing is that the registrar is insisting on a side ward and the only available room is in the Waterside (the private wing of the hospital). That would turn out a god send!

So on the next day (Tuesday 23^rd of June) I am eventually being operated on for the second time. All goes well and it seems the infectious tissue has been removed and one part of the ceramic liner is also replaced.

Fairly quickly they start injecting antibiotics and after numerous blood tests they settle on Teicoplainin 600 mg to be injected once a day (later this is increased to 800 mg). This and oral Rifampecin is my lot for – as I am told at least two weeks. But it could be longer.

One week in hospital – getting bored badly – all that happens to me is this daily injection and endless observations. And then finally on the 29^th of June I get discharged in another saga of things not happening. It takes until the late afternoon to be told, the meds again are not ready for me and I should go to the discharge lounge. There is no saying how long for. Well I am not going into that place again. So we arrange that I will get a phone call when the meds are ready – and this time that works and we come back in the early evening to pick them up.

The next day the daily routine of IV starts. I was told that the IVs should be given at 2 PM every day and the nurses in the hospital were very insistent on the time and on keeping to that time. But … the IV nurses insisted on 11 AM. OK to fit into their schedule, which of course revolves round a number of already existing patients.

So this is how it is arranged for the next two weeks and then two more and then a further two. These IV nurses are angels! They are so friendly and very co-operative. Three times they go out of their way to accommodate my activities with the Red Hat Society and make it possible to take part in the planned events, by coming late or early as needed and doing it gladly! What a wonderful team!

So then comes a point when on Friday 3^rd of July, I think there is something wrong with the dressing (it appears to go a little green, mildewed looking at one point of the dressing) I show one of the IV nurses and they recommend that I call the surgery to get an appointment quickly with one of their nurses to get the dressing changed. I do just that and … get told there is no appointment available. So the IV nurse calls …… and she manages to get one. Why couldn’t they give that to me?  The nurse at the surgery changes the dressing and thankfully all is well.

In the process of this it turns out that the surgery of my GP in all this time has not yet received any documentation in connection with all this. None of the two discharge letters have arrived, not to mention any report about the bleeding, the staph infection or any of the treatment that is ongoing.

WHAT? We are by now 37 days past the first operation and 10 days past the second, not counting all that went on in between. And none of the services (A&E, ambulance, paramedics, district nurses, emergency district nurses, surgeons, clinics etc.) have seen fit to notify my GP of the horrendous problems I have been having?

So I make copies of my copy of the two discharge letters and hand them to the nurse who removes my clips on the 8^th of July, when she tells me that there is still nothing on the system.

On the 23^rd of July I realise that I am about to run out of the Rifampicin and had better get a repeat prescription. The box I received from the hospital states that I am to contact my GP for that. OK so I ring the GP and he is happy to write a prescription. But when I try and fill it, I cannot find a chemist that has any of this medication (Rifampicin 300 mg to be taken twice a day) and none, after phoning round, seem to be able to get any. There is a manufacturing shortage I am told and not even the wholesale places have any or can get any.

Well I have an appointment to see the surgeon on the 27^th of July. So I call his secretary and tell her my problem. She will pass it on to him. When I see the surgeon, it does not seem a problem to prescribe it via the hospital pharmacy and they seem to have the stock to fill the prescription.

All is well and things are “on the up” – or at least so I think. I am coming to the end of the IV treatment and the nurses are trying to organise the removal of the picc line on or after the 10^th of August, when the last treatment is supposed to be given.

Then I get a call from one of the nurses to let me know that I should get in touch with my GP to obtain a prescription for Ciprofloxacin 500 mg to be taken twice a day for six weeks once the IV finishes. My GP has not been notified of this at all, but thankfully I have a good relationship with him and he is OK with giving me the prescription.

BUT … I have not been told why there is yet another antibiotic. Who ordered this or why, is totally unclear. So I call the surgeon’s secretary to try and find out. She tells me that Mr Odutola is on annual leave, all the registrars on his team have left to go elsewhere and the team is totally new. So nobody actually knows anything. WHAT? So who has ordered this? Well the secretary does not know (or won’t tell me?)

This is not good enough! It adds yet another layer of stress to my situation, which is stressful enough.

Added to it all I am now coping with side effects that nobody thought necessary to tell me about and certainly nobody thought about telling me how to deal with them. After talking to a very nice chemist, I am now sure that the increased pain in my Achilles tendon (which is in all kind of troubles anyway) has to do with the antibiotic and that the nearly unbearable itching in certain parts of my anatomy also comes from there, as does the general feeling of being run down and the lack of concentration. And then, after some internet research, I suspect the ongoing sciatica in my left leg is also at least aggravated by the antibiotics, if not caused by them, since I normally don’t get it on the left.   Didn’t I have enough problems? The chemist tells me to make sure I get enough yoghurt and vitamins and maybe some iron to build myself up again. Why did the doctors not tell me that? Especially since I actually asked about pro-biotics etc. because I knew that antibiotics had an effect on the immune-system etc.

I am beginning to wonder if this is going to spoil our holiday, which we are so looking forward to and which I really need by now.

Already I have been refused the health part of my travel insurance, because I have not been discharged from the hospital and of course there is now no chance of being discharged for the required three weeks before travel at the beginning of October, since this additional antibiotic won’t finish until the 15^th of September. So I shall, after all this, have to travel with no health insurance. Good job we are going to be in Europe and I have the European Health Insurance Card, which will be better than nothing. Other than that I will just have to pray that nothing will go wrong, health wise.  

This whole saga is totally and utterly full of things that should never be allowed to happen.

·         An infection to set into a wound at operation stage – ok that happens, but shouldn’t

·         When things go wrong there is absolutely no suitable support

o   Ambulance staff with very little clue and no suitable dressing material

o   Paramedic not much better

o   District nurses unreliable and not at all helpful

o   Emergency district nurses not recognising the fact that this wound is seriously infected

o   A&E staff also not recognising this

o   A&E staff just not listening to me and dressing my wound so I react totally allergic with rotten consequences for several weeks and ongoing

·         Discharge procedure the first time total and complete shambles

·         Complaint to PALS totally ignored since my second email

·         My GP not being kept informed in anything like a timely manner

·         I am supposed to organise a prescription from my GP, (who has to ask ME what is wrong, since there does not seem to be anything on his system yet) for yet another antibiotic and nobody seems to be able to tell me why

·         My having to run after everything myself or it won’t happen (the exception being all the wonderful support from the NSCP IV team!)

·         Communication between the different parts of this health system non-existent

·         And so on and so on … one thing wrong after the other and my mental state is getting worse not better with all this

I can’t think of a more confused and disjointed set of circumstances and procedures. The treatment medically seems to have worked, but in the care or mostly lack of care around it, the only team that was worth anything and did really and consistently well were the nurses of the NSCP IV team. They really did seem to know what they were doing and could and would sort out any frustrating mishap around them, weather it was their job to or not. I can’t thank them enough for their help and support in the six weeks they came daily!

Mr Odutola himself too was, at least towards me open (I hope) and helpful and very supportive and again I am thankful for that!  Also the nursing team on the Waterside were wonderful and helped as much as they could under difficult circumstances.

Everywhere else there were mostly obstacles and hindrance, wasted time and no doubt much wasted money, uncaring and not listening behaviour, lack of equipment and dressings  and generally not anything supportive or helpful at all. The aftercare in this town seems to be horrid, lacking and generally badly organised.

So this is going to many of the organisations involved in this saga and I would like very much feedback from everyone and questions and reactions from all involved in a timely manner.

One last point: It is very much too difficult to find out who is responsible for each of the organisation involved in all this. I still don’t know for example, who heads the District Nurses Team and so who is the person to write to there.