Standard of nursing care

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1

I am currently making a formal complaint re the overcrowding/unacceptable physical conditions & complete lack of privacy in the chemotherapy suite in the teaching hospital where I’ve just received my 5th session of treatment.

However my further concern, which I have twice discussed informally with the Matron of the Oncolgy unit concerns nursing care and is of even greater importance to me.

I know from family and friends’ experiences that smaller hospitals are providing a much higher level of nursing care to their chemotherapy patients from that found in the 60+ patients-per day in my unit. The Matron here apologises but regretfully tells me that such a level of TLC is not possible with the huge thro’ put of patients, many with complicated cancers. I cannot accept this- and don’t think she should either.

I see no evidence of shortage of nurses here, simply that the increased number of patients has resulted in a change from a patient- centred approach to a task-centred one- which seems to have been given sanction by the imperative to meet NICE targets. I trained as a nurse in a v. large London teaching hospital (admittedly many moons ago) but however busy we were, TLC was always the priority. If today’s trend continues, towards fewer but bigger hospitals, this does not seem good news for the future of nursing standards and individual patient care.

Also, I fear there is a certain amount of status- seeking amongst the many highly qualified staff in chemotherapy units and though individual nurses are generally pleasant for the brief time they spend with you ( as opposed to the huge delays in treatment which are always blamed on “The Pharmacy”) during this waiting period there is NO nurse contact, heightening the general experience of being dealt with as a number rather than as an individual.

I am happy with my oncologist and there is no alternative hospital to which I could transfer as I live in a rural area. As it is, I am away from home on treatment days from 8am-5pm - of which a max of 2 and a half hours in spent in consultation and treatment.

It surprises me that I have not heard of any similar comments in these forums- I wonder if it is because so many of us are too pre-occupied in coping with the emotional and physical impact of our diagnoses and treatments and simply have no energy left to complain?.

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Hi Topsy

The ‘centre of excellence’ where I was treated four years had problems similar to those you describe. Really, really long waits, up to 12 hours in some cases and horrendous overcrowding. Giving people pagers so they could ‘get a bite to eat’ (at their own expense, naturally) and ‘have a look round the shops’ (we didn’t all have buckets of energy - or cash) while they were waiting rather missed the point, I felt.

I’m not being treated there now (I’ve moved), but a close friend assures me the situation is just the same, if not worse. I really felt for patients who had long car journeys (up to 3 hours each way) on top of these delays - it was misery.

I think you’re right - most of us have other things uppermost in our minds and we’ll put up with just about anything to get that vital treatment. We’re British too - the ‘don’t make a fuss, form a queue (no matter how ill you are) stiff upper lip, jolly hockey sticks, we’re all in the same boat’ brigade - and, as a result, possibly our own worst enemy.

I endorse your comment about smaller hospitals being better - halfway through my chemotherapy the treatment was transferred to a ‘satellite’ hospital much nearer my home and the difference was staggering - calm atmosphere, no overcrowding, unhurried and unharried staff and much shorter waits.

I think also too, that in the UK we are so used to bad ‘customer service’ (for want of a better word) in so many areas of public life that we expect it and accept standards that certainly the rest of Europe and many other places in the world would not tolerate.

X

S

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Hi Topsymo, I am sorry that you are not getting the right care from your hospital.I had my treatment at the Marsden in sutton, and although it was very busy, and we had to wait for 3 maybe 4 hours for chemo the standard of care was excellent.We were given pagers so we could go and get something to eat while we waited.The main cafe was quiet expensive,but they have a cafe run by the friends of the Marsden which was less expensive and run by very friendly volunteers(spelling?). I do hope the standard of care improves for you.

love and best wishes Mellx

4

I was treatd at the Western in Edinburgh and while there was a bit a wait occasionally and staff shortages, I felt very well taken care of I was only there for a few hours on chemo day, I got tea, biscuits and a sandwich if I wanted. The actual cafes are not overley expensive. The maggie centre is onsite and free. I was fortunate living 20/40 mins from hospital by car. There were others coming from outwith Edinburgh so I sppose if they had spen a few hours getting there other minor issues would seem alot worse.
The nurses were mainly great and I have utmost respect for them trying to do a difficult job in sometimes difficult conditions. In fact while many people debate the fact that many nurses are leaving the profession, many seem to be retraining and joining it.

5

I was treated at the Western General as well, prior to that at Queen Margaret, Dunfermline. I’m pleased to say I had no problems with either. I am only 35 mins drive from Edinburgh so the journey time was fine too.The first 2 chemos I had at QM were done in a quiet side room, but then they moved to a new haematology ward which I didn’t find so good as it had a huge flat screen TV on the wall (just a personal thing - I find TVs in hospitals irritating as I prefer peace). I quite enjoyed the Western as I found the staff very kind and cheerful, also the WRVS volunteers were lovely when they came with tea, coffee sandwiches etc. I never went to the Maggies there, but I used to like sitting in the window of the chemo ward looking at the little garden - it was a very pretty diversion. The staff at QM were really good as well, but I did find the nurses at the Western had a little bit of an edge on them, maybe just on account of it being a teaching hospital.

6

I had emergency treatment at the Western General in Edinburgh and today received the official response to my formal complaint. I am pleased to say they have reviewed some practices and procedures. They have admitted that administering antibiotics straight from the fridge intravenously is “uncomfortable” (try agony as your veins seize up), so the Pharmacist has now recommended that they be removed from the fridge a little time before use in order that they may heat up a bit. I ended up heating the antibiotic packs between my legs whilst the saline was running through the pump and thought the practice was inhumane. So, one good change!

Interestingly they DO still say it’s ok to take blood out of an arm affected by axillary clearance. NOT what my BCN or the Lymphoedema Support Network say. However, they have decided to ensure that ALL doctors are aware of the protocol to ensure everybody sings from the same hymnbook so to speak.

I trust my complaint has helped make life a little easier for those who use the service in the future.

7

I had to have blood taken from the left arm that has been cleared, there was no choice as the veins packed up on the right and I suffered a chemo burn to my hand and wrist from Taxotere. I’ve also had the injections on that side for the MUGA scans and also most of the Herceptin treatments on that side. The consultant oncologist gave approval for this. I wasn’t keen to have a line and was told I would only be given one as a very last resort. The surgeon I had doesn’t agree with a lot of what gets said about the causes of lymphoedema.

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You were at the same hospital as me Cherub - do you mind me asking who your onc was?

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Hi topsymo

I think the general issue you raise is really important and should be taken up by cancer charities. I hear awful stories of people hanging around waiting for chemotherpay for 12 plus hours in larger NHS hopsitals.

For my sins (guilt here) I have private medical insurance and attend a tiny private hospital where I have appointemnt…turn up, have the chemo and leave (I was there having taxol for just an hour and a quarter this morning.) Now I know the NHS can’t emulate this (and there are disadvantages to private care) but emotionally it helps me no end that my hospital visits are short and manageable. After loads of chemo I can’t imagine what it must be like waiting and wiating on each visit.

best wsihes

Jane

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I would think it would be soul destroying Jane, to say the very least.

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When the nurses cant get a vein on my good side (I use thet word very loosely) They have used my foot! not as bad as it sounds. There seems to be confusion all round as to whether your bad side used at all, I was told by my onc she d rather not but if at all then blood could be taken, meaning they can take out but not put in. There was a trainee nurse in the cancer centre who was shaking as she approached so used to let her near me lol
THinking about it now some of the nurse would warm up drugs by bbing them between hands briefly unfortunately Isuppose these light temp erature differences might only affect some of us so they are unaware of it, also patients may be thinking, “well I do have bc so its bound to be sore” and not make a fuss

louise

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WestsideSue, I had Drs Bowman, Heywood and Gilbert for oncology. I really liked all of them and found them very caring and professional. My husband attended every appointment with me; they always showed concern for his well being too and were always ready to answer any questions he had. Thankfully, my OH is a very strong person emotionally and he kept me going all the way. He also acted as “tea boy” when I was having the Herceptin done at home lol!

They tried to use my foot for Herceptin (with my permission), but I don’t have good circulation so get very cold feet. I have something that’s like a mild form of Raynaud’s. When they tried my foot I could not stand it as there was so little flesh there, so they decided not to try using it again. I didn’t like the inside of my wrist being used either, but it was more sufferable than my foot.

13

I am pleased that the subject of long waits for chemotherapy has been brought up. I finished chemo in June. I have waited up to four hours for treatment. This was by far the worst time that I experienced during the whole of my treatment. On occasions a notice was up at reception stating that there would be a delay but not for how long.

After booking in at reception I would wait and wait and wait. No-one gave any indication or acknowledgement that I was here waiting! I truly found this soul destroying. Normally I am calm and collected but always I started to cry after a few hours and eventually would end up very,very upset. So much so that they would start my treatment!!!

This misery eventually ended when I told the nurse at my doctors. She rang and complained on my behalf. The last two sessions I was treated on arrival.

Margaret

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Jane

Don’t feel guilty about having private medical insurance! Why should you?

I didn’t have it, but I never hesitated to use the spare money I did have to plug the gaps in my NHS care.

Using the bad side, eh? (On to my favourite topic, I’m afraid). No lymphoedema specialist I’ve ever spoken to has even so much as hinted that this is acceptable practice (quite the contrary). Non-lymphoedema specialists on the other hand seem happy to stab away and assure their patients that their fears are unfounded. It has been observed that the tiny risk of contracting AIDS does not prevent staff wearing protective gloves to treat all their patients - why should women with ‘at risk’ arms have to take the same chance? The two conditions are alike in that once you’ve got them, there’s no going back.

It’s a sad fact that a if you have a chat with a lymphoedema nurse, an information pack from the LSN (which always used to include a card to carry in your wallet stating which arm or leg was at risk) and a couple of hours to spare on the internet, you’ll probably end up better informed than many ‘health care professionals’. The lymphatic system, by and large, is not well taught.

Our kind of lymphoedema (secondary lymphoedema) is caused by the doctors who treat us. It’s an unfortunate and permanent side effect. Unfortunately, neither the surgeon who removed your lymph nodes nor the oncologist who planned your radiotherapy will ever take ownership of the problem, instead passing it on to BCNs and lymphoedema clinics.

It’s very important not to disrupt skin continuity. My little lymphoedema bible (one of the co-authors is Prof Neil Piller, one of the biggest names in the world in lymphoedema research) says ‘the skin is the most important barrier between our internal (normally sterile) environment and the outer one which is filled with germs and other micro-organisms. If they get in, they will generally rapidly multiply…Any infection will mean a very great increase in lymphatic load. If the vessels cannot remove this fluid, it will accumulate in the tissues and the arm will swell’.

Note that the sterility of the needles is NOT in question. And this also why an injection can be just as much of a threat to your arm as a bite, scratch or cut.

I’m really, really, sorry everyone, I 've ranted on again. But I’ve got lymphoedema and if you haven’t, believe me, you don’t want it. Politely and firmly, resist attempts to use your ‘bad arms’. Having injections in your foot is no fun, but it’s a hell of a lot better than what may result otherwise.

Check out the website ‘stepup-speakout’ (you’ll have to google). There’s some excellent printer friendly material you may wish to run off and take with you to hopsital in future.

Also, you may like to take a look at the thread ‘Risks’ on the lymphoedema board here…

All the best, all

X

S

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Cherub, I had Dr Yuille - she was fantastic. It was her registrar, Dr Malik, who told me off for refusing to let them take blood from the bad arm (according to the reply to my complaint he was trying to reassure me - aye right). When I reported to Dr Yuille what he’d said she made no comment, but the look on her face said it all. I rather suspect he got a telling off himself!

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Hi Sue, the oncs I had do their clinics in Dunfermline on Tues/Thurs, Dr Gilbert is also in Kirkcaldy sometimes as he deals with chemo related skin problems too - when I was in isolation for a week with a burn and no immunity he was dispensed to see me 3 times and it was like seeing a friendly face!

The other consultants there kept saying “we’re haematologists, not oncologists you know” and I was made to feel like a complete nuisance. At one point one of them said I should have gone to the Western as I was their patient and at another point I had 2 consultants talking over my head while I was sitting on the bed! Had it not been for a junior doctor called Andrew I would have felt very lost - he had 6 months training with my surgeon and he was such a kind and caring young man. Nothing was too much for this boy and he was always chasing up test results for me.Sadly, he was one of the junior medics we lost to Australia last year, I am sure he would have been a credit to the NHS.

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I had Angela Bowman but very often saw her registrars Dr McClellan and Dr xxxxxxxxx (it was a foreign sounding name but it sounds like the Swarvoski crystals I think. Both were very good, Dr Bowman was great when i was in ward 2 for 3 weeks with an infection.

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I think you mean Dr Schwarzi. I had a problem with my arm tissuing during a Herceptin treatment at home and this was who the nurse contacted. Dr Gilbert is the registrar who works with Dr Bowman in Dunfermline, but he is also at the Western. He had my chemo burn photographed and asked for my permission for a paper to be written on it. Looks like my hand may have got 15 minutes of fame lol! When I had my Taxotere done on Wednesdays Dr Heywood was generally on Ward 1. Dr Bowman used to work with my cousin who is now a Professor and he told me she was an excellent oncologist and that the team at the Western were one of the best. He is a BC expert and gave me some advice when I was undergoing treatment.

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Cherub, Perhaps I was just unfortunate, but my stay at the Western with an infection was a catalogue of disasters as far as I was concerned. It was definitely the low point of this whole bc carry on for me.

I have decided to pursue a couple of issues and am awaiting information about lymphoedema and its causes to present to the Clinical Director. The hospital did admit some of the things they did were wrong - such as leaving my medical notes on a chair in the hallway where anybody could look at them. I have got the pharmacist to admit that administering intravenous antibiotics straight from the fridge is perhaps a bit inhumane and he/she is altering the practice to allow the antibiotic packs to warm a little first. So, making progress!

20

When I was in isolation for a week in Kirkcaldy, a Consultant Haematologist suggested it would be a good idea to “leave the Venflon when we discharge you so the Western would find it easier to administer the Herceptin”. This would have meant having it in for another 6 days, despite the fact it had already been in there longer than it should have been! I was just made to feel like a total nuisance because they kept saying I wasn’t their patient; also, did I realise they were haematologists and not oncologists. I really wanted to say I didn’t give a monkeys who or what they were, I just wanted to know what was wrong with me. One of the Consultants kept talking over my head to the other one,saying “aside of this woman’s issues with breast cancer…”. Let’s just say, they were not great examples of the medical profession, but they were excellent examples of its arrogance at times! Talk about being made to feel like a bed blocker…

I also had a nurse there who thought she knew more than the combined medical profession of the entire UK and when they got to the bottom of the problem with the blistering on my hand she sanctimoniously said “I could have told them all that about 4 days ago”. Give me strength!