Treatment Differences around the country

Hello, there.

I have been haunting the forum for some time now, and have noticed a really marked difference in the way everyone is treated by their own NHS area.

I live in Exeter, and am therefore treated at the Royal Devon & Exeter. Apart from diagnosis and surgery, the main difference I have noticed is in the way Chemo is given.

The RD&E offered me a choice of a Portacath (which I went for, after having checked out the options - Youtube was very useful here, I found) or a Hickman line. It seems they didn’t even consider a PICC line (although I have since met someone who was given one - possibly his choice)or just a cannula. The Portacath was inserted under local anaesthetic (no choice given there).

I have also been given anti-sickness in a drip both times (on week 2 post-FEC no.2 - having 3xFEC, 3xT) and the other FEC drugs are administered by injection into the drip lead to the Portacath Huber needle. I have also been given 3 lots of anti-sickness pills to take at home, and the Neulasta injection (1, 24 hours after chemo), as a matter of course. I have had absolutely no nausea or sickness - other side-effects, yes, but all fairly minor considering some horror stories I have read here.

I have to say, I feel extremely lucky after having read so many other posts.

What treatment are you getting in other parts of the country? From the posts I have read, Shropshire sounds bad! I have to say that the RD&E has been marvellous!

Fran. xx

Hi Fran

It’s interesting the diffence in treatment depending on what part of the country you’re in eh?! I’m in Scotland, Tayside - I had my surgery in Perth (lumpectomy) and Dundee (mastectomy) - am now on FEC (x6) and am getting that in Perth.

PICC line was mandatory - no other option given, but seems to be the best way to go to save your veins! I have been treated so well, the nursing staff and doctors have been amazing - you hear so much about the NHS being crap but I have been so impressed with everything so far.

Side effects - so far only hair loss! Haven’t felt sick or tired or any of the things I was dreading! Am actually scared the chemo isn’t working as I feel so well! Hope things are going well for you too. Lynne x

Hi there

I am really concerned when I hear that certain treatments or routes of recieving IV treatment is termed mandatory. We all should have a choice in our treatment (guided by information) and choice in the route with which we recieve it (again guided by information). no-one should be told that a route is mandatory as there is such a thing as ‘consent to treatment’. People can make a choice to refuse treatment or refuse a certain route of administration. I did not want a PICC line. Rightly or wrongly, I felt that this was ‘not for me’. The nurses were great and supported me to persevere with the IV route into my hand. I feel very strongly about this as I work in Mental Health nursing and we are very clear about ensuring we have gained consent and that patients have the appropriate information about their health, care and treatment options, and are kept informted throughout. Sorry, sounds like a rant when I read it back, but I do think we have to be careful and ensure that as this is our body that we have rights and choices. Take care all. J.

It is a bit of a tricky area this one as I can see why hospitals want to push the PICC line. I’m being treated at North Devon District Hospital and have no complaints about my care. I was strongly advised to have a Hickman fitted as I have bad veins due to another condition and everything was fine until it got infected. I won’t go into all the gory details again here, suffice it to say that the whole nearly dying experience still gives me nightmares.

I cannot fault the care I have received and to be honest if I had to go through chemo again I’d still opt for either a Hickman or Portacath to reduce the risk of vein damage. One of the nurses on the chemo unit told me that the hospital is planning phase in everyone having at least a PICC where at all possible to reduce the stress of cannulation that so many patients suffer with. I don’t see how they could insist though if you really didn’t want it.

BTW I’ve just finished rads at RD&E and the staff were absolutely marvellous!

Nymeria x

I’m unfortunately being treated in Shropshire.
I asked for a Portacath, but they don’t do them here, the chemo nurses told me they have never seen anyone with one. They also will not give the Neulasta injection, we all have to have the daily injections if our white blood counts go down…seems like such a false economy.
The chemo day unit and staff are very nice and supportive here, but if you become ill from the chemo after 6PM or on weekends the hospital is just rubbish. Why the standards are not the same for all NHS patients is sad, it really is a post code lottery.

Hi Girls
What I have noticed when reading through the forums is that many of you seem to be seen between treatments I don’t,I have my treatment then don’t go back until the next one,unless I have a problem then have to phone onc day unit.I am in Newcastle going to NTDGH
Rhona.

I see my Oncy a week before the next poisons, he looks though my record chart that I keep of my SEs and makes adjustments for any severe SEs.

It’s also a time to discuss adjusting the regime; I’m on neo-adjuvant chemo and my HER+ status only came through after I started EC so he was able to discuss how and when I’ll be changing half-way through in order to incorporate herceptin; can’t take it with EC.

Hi,

I am treated in Bournemouth & was offered a picc line which i took them up on.

I have finished chemo now (3 weeks ago) but when i was receiving it the care was brill.

The district Nurse would ring on the night of chemo to check se’s were ok & nausea/sickness under control, had i ever answered no they would of come out to give me an injection, i also saw Onc at every pre chemo which was 2 days before actual chemo to go through any issues/questions/Se’s.

Sarah.xxx

Thank you all for replying.

There seems to be such a huge difference in options and treatments all over the country.

Nymeria - the staff at the RD&E are marvellous, aren’t they? For my second FEC, though, which was in the afternoon (the first was first thing in the morning) the Chemo room was packed with patients, and there were only 2 staff seeing to everyone. I don’t know how they kept their cool, but they did, and were polite and kind to everyone.

Sarah - you seem to be having really good treatment, too. Fancy getting a call from the District Nurse each night after chemo! Wow! I do get to see an Onc (not mine, usually, a Registrar) on the day of chemo, just beforehand, but there was minimal checking on se’s, etc. Last time he left me sitting there, thinking he was coming back with an appointment, but then seemed surprised that I was still there waiting about 10 minutes later - he said I should have gone to the chemo day unit!

Noanie - you poor thing - Shropshire sounds to be very backward in the treatment of cancer patients. I got that impression from several other posts.

The RD&E is an NHS Foundation Trust - I don’t know if that has any bearing on how we are all treated?

Fran.

Hi I am in Exeter also and must say after a rocky start a few complaints the R.D. AND E have been wonderful. The chemo ward you could never fault hard working ladies who miss lunch and tea breaks to deliver chemo as quickly as possible. Treatments vary within the RD and E as mine was 4 fec and 4 tax but due to my well being didnt need any other treatment. I also had a portacath.I think the big issue is, how do you respond to treatment as to what extra treatment you get.

I’m in Guildford at St Lukes, part of the Royal Surrey. I had to kick and scream for a portacath, though they will offer a Hickmann or PICC. Not sure if you have to push for those too or whether they’re offered as a matter of course, as I started my portacath campaign several weeks before chemo started.

Surgeon was terrific, very caring, very skillful. BCN team are also really good, though I haven’t seen or heard from mine since just after surgery. Not a problem as I haven’t needed to see her. The onc team seem to have no sense of continuity of care though. I’ve seen “the man” twice (the second time because I’d been admitted) and every other time I’ve seen different registrars who have said opposite things to each other, and one of the chemo registrars clearly didn’t understand what the main part of rads does and what the boosts do, which is a bit worrying. (When I saw the rads registrar I suggested he might like to set his colleague straight on that.) But the conflicting advice etc doesn’t instill masses of confidence. The chemo nurses are brilliant.

They don’t do WBC injections as standard (good, I haven’t needed them so far) and their standard anti-sickness is ondansetron and dexamethasone, though they also use metaclopramide and domperidone. Don’t know what else they use, I can only speak for myself.

I’ve had 2 fec and due for third today. I’m trying desperately to get a line fitted as my veins are going to pot. No mention of the effect on veins on the consent for where the SE’s are ticked off. I’m about to write it all down as I can’t trust myself to say what I mean without crying. Think I’ll probably cry anyway. Seems the policy in Maidstone is only to fit a line once your veins are ruined. Sob sob.

Haven’t seen my onc since firt visit, seen a registrar, seen a trainee nurse, spoken of phone to someone else, not sure who he was. No continuity of care. In contrast to the brilliant Breast Care department that I really have nothing but praise for.

I’m like CM and being treated at St. Luke’s part of Royal Surrey in Guildford. I have a PICC line, which I asked for and they had no problem giving me, although I think if I hadn’t asked for they would not have given as a matter of course. they also do Hickman’s and Grauschongs(?spelling?)they would not do a portacath, (cost reasons, I’m sure) so CM must have made a good case. Actually I’m very happy with the Picc,so not a problem.

My bcn and team have been brilliant and have made themselves available whenever I have wanted them, but that has not been often. I am scheduled to see my onc at FEC3 but my chemo is always set for the days of his clinic so he is available to me if I want…

My surgeon and surgical team were amazing at the time,but have not seen them since last surgery, but would not have expected to. My surgeon has written to me and said that as we will have a ‘clinical’ relationship for some time to come, he will see me personally in a few months and will not allow it to be his registrar and his door is open should I ever have any queries…
We have a chemo hotline for any worries and it operates24/7. Haven’t had to use it. I’ve only had my first FEC but my chemo nurse was lovely. I had intravenous steroid before the FEC as an antiemetic and then wot Choccie said, dexamethasone, metaclopramide and odansetron, but others would ber available to me if needed…

I feel I have had superb care and have no grounds for any complaints and feel quite lucky to be being treated at Royal Surrey…

Wandyx

Oh, hipchick and Chocciemuffin - I feel for you! I’m glad you were successful after your campaign, CM. hipchick - I know what yu mean about crying - I can’t talk about it most of the time without crying - you feel really silly, but you can’t stop yourself! I think a letter is an excellent idea. Persevere - as several others have said (sorry, can’t remember everyones names), they are your veins - you surely have a right for them to be useable in the future and not be painful. (Hope that made sense!).

The ONLY complaint I have about the fitting of the Portacath was that in all the literature I was given at the hospital, and told by the Pre-clerking nurse, was that the surgeon/radiologist (whoever did the insertion) would discuss with me where the Portacath would be fitted before he inserted it. To that end, when the nurse in the chemo ward (before I went along for the insertion) told me to keep my bra on, I thought that was so he could mark the position of the strap and so avoid rubbing. No such luck! He just went straight ahead and did it without consulting me (or my bra strap! - which I had to remove, of course), and, of course, by that time I was scared and completely forgot to ask about it. Consequently, the insertion scar is directly under my bra strap and gets rubbed all the time. It is still quite itchy and red, and the insertion was on the 11th May, just before my first Chemo.

Wandy - sounds like you have a really good team behind you.

hatty - I might bump into you some time! My third FEC is the afternoon of 23rd June (if bloods are OK, of course).

Fran.

Oh - what differences - I wasn’t given any choice about IV - there was an assumption it would be by cannula and even when veins are playing up that’s what they to continue with… did not know so many other people chose not to have cannulas until I read some of these discussions…

another Fran
x

FrancesW (greetings, another Fran!) - that’s awful - why should they just ruin anyones veins! I think some form of line should be a basic right (by choice, of course - I know some people would prefer not to be “invaded” by something else) as part of the treatment of Cancer. It’s not fair to have to suffer further pain and discomfort when it is perfectly avoidable!

Fran. x

Yep - agree Fran. Was not given an choice although would probably have stuck with cannula at that point - having now had 6 FEC and 3TAX plus numerous CT contrasts veins are not good at all - might need some help before too long since even blood tests are getting tricky… Thankfully on Capecitamine at the moment and that’s a tablet chemo - phew!!