Should I complain?

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I just want to run past you my recent experiences in the oncology unit and want to know, whether I have unrealistic expectations, or whether I have cause for a complaint. I don’t really want to make a formal complaint, but feel that I need to air my grievances with the hospital. I have considered phoning PALS and asking their opinion, what do others think? I have spend his afternoon trying to contact the onc’ secretary but the phone never gets answered.

My consultant is well respected, yet I rarely see him, When I was first diagnosed with secondaries, I waited over 3 hours as is usual and ended up seeing one of the registrars. He was fine, I had no problem with him, but he kept going out to ask the oncologist questions before deciding on my treatment. I must admit I was surprised not to see the main man at this so important appointment. The following appts I have always seen a registrar. I did see the consultant very briefly when I was referred on for surgery rather than rads to my hip (although my appt wasn’t with him the registrar went to get him for his 2 minute opinion!)

When liver mets were diagnosed, it was at an appt with the registrar, who said I had to make another appt with the consultant to change my treatment. Surprise surprise after an even longer wait the next week, it was a registrar I saw and he changed my treatment. I was told in February that I would need another scan in 3 months. I was sent a consultant appt, but no scan (I had to cancel this because I was in hospital, I asked them to send a new appt – it never arrived. ) I saw the registrar at my rads planning and asked if the CT had been booked he said no and that he’d book it…he didn’t. At my Zometa appt the registrar was there but I didn’t have an appt. I left a note asking him to book a CT…didn’t hear anything. I phoned the onc’s secretary and I received an appt for a CT scan in June, which I had. (only 1 month late) but the results are another thing! - apparently the first appointment I can get to have the results is 31st August !) 10 WEEKS after the CT scan! I was told the oncologist is on holiday, but I NEVER see him anyway, why can’t somebody else give me my results? Is it worth asking if they will send me a copy of the report (knowing that they won’t, or ask my GP surgery if they can access it!) I still have no idea whether the faslodex is working!

Also my last 2 appointments have been cancelled when I got there, after rads was an exception because the reg had to rush off because his wife had gone into labour, but the appt they made for me 2 weeks later at my Zometa clinic, no Dr was there at all! To add to this the registrars will be all moved around next month, so it’ll be more people who don’t know me!

I just wanted experiences to compare this with, How many of you regularly see the same oncologist? I don’t think my oncologist would even recognise me or knows anything about me. I certainly don’t have a relationship with him. Can I request that I see him for some of my appointments?

Surely secondaries should be treated with more urgency, as a secondary BC patient do I have any right to actually see a fully qualified oncology consultant. I have no BC nurse (they don’t DO secondaries here) and wouldn’t know who to talk to if I had a problem – if it wasn’t for you lot I would be completely in the dark about my cancer.

Sorry this is so long and waffly- the moans just keep on coming.

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I think that you are being treated terribly Nicky. I am not sure that all hospitals have pals now (another cost cutting thing).

I only ever see my Consultant and to be honest that is what I would expect (in our situation). She tells me when she is not going to be there. I have a direct line to her secretary and I know the Onc will ring me back, the same day if possible.

I have only seen a registrar once ( by accident). However, I do not have a secondary BC nurse as you know.

I do not really know much about our actual rights but suspect you have drawn a very short straw.
Maybe you should phone BCC helpline tomorrow and ask their opinion. I think that I would be asking for a second opinion. Have you spoken to your GP about this ?

Julie xxx

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…and as for the cock up getting results…that defies belief.x

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Hi Nicky

I’m really sorry to hear that you are have such a horrible time. There are many ladies on here able to express this better than me but what you are describing is totally unacceptable and you should raise this with PALS as soon as possible.

You may also find it helpful to ring the Helpline as they will be able to advise you as to what you can reasonably expect and how to proceed if things fall short of your expectations.

I too have had issues with my treatment, and sadly, my experience is that if you assert yourself you get the treatment you should have received in the first place.

Good luck and don’t be afraid to stand up for yourself, some of these people rely on the fact that you are too intimidated to say “this is not acceptable”.

DaisyGirl xx

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Hi Nicky as you know I am not a secondaries lady but we have met so I hope it is OK for me to chuck in my twopennyworth.Your treatment sounds appalling. I rang a member of my staff who is being treated for her secondaries by the same team as me. She always sees the Consultant Onc ( we both know him) and always leaves the clinic with an appt for whatever scan etc is next( not always at the same site)This was the same for our primary treatments.
There seems no continuity of your treatment here and it is so v. important-yes I know the registrars need to learn but this does not seem acceptable. Daisy girl made some really good points I think you need to raise this as an issue with the PALS team ( they are now called Customer service dept in some PCTs)but the hosp switchboard will know who you mean. Also make a note of who you speak to and follow up in writing all a big faff I know esp. when not feeling 100% Good Luck J xx

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Yes, I would complain Nicky - you have been treated abominably and shouldn’t have to deal with such ineptitude at arranging appointments, getting results etc, etc.

I’ve no idea about our ‘rights’ as secondary ladies but like you say we should really be treated as priority.

As you know and we have frequently chatted about, BCN non existant really here too unless I were to ring up and ask to speak to one. With regard to the consultant, I get a mix between her and registrars generally. I saw the onc before every chemo round when first diagnosed as she wanted to keep an eye on me and then alternated between her and a registrar for my checkups so I saw her twice a year on average. After I mentioned to the reg last Dec that I was having that pain, he sent me for scans and said he would speak to onc as well and to go back to see him in a month. When I went back, I saw onc herself. Not sure whether it was because of fact that I needed the one-off rads blast or not. Next appt I saw reg and then last month I saw onc again. Next appt is Sept and she is ordering a bone scan to be done beforehand so results will be ready for appt. She has done this several times before and it has always worked. I can also email her secretary with any queries and they are dealt with immediately. It seems to be an arrangement that works well and I am happy with the way it is all handled.

Huge shame you can’t get the same treatment - can you change hospitals/consultants??? It’s worth a go.

Liz xx

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Hi Nicky,

Well I’m absolutely flabbergasted! It’s really unbelievable the way you’ve been treated. It’s incrediable that you have to chase for appointments especially scan’s which are so important for out peace of mind. I think 10 weeks is an unacceptable time to wait. I had to wait nearly two months and I ask my Onc if it would mind be possible not to have such a long wait inbetween scan and see her. I sail along as happy as I can be but waiting for the results caused me a lot of unneccessary stress and anxiety. Something we need to keep to an minimum.

I’ve copied the Pals website for you. I would certainly telephone them and I’m sure you’ll be able to speak to someone confidentially to voice your concerns and get some positive feedback.

nhs.uk/chq/Pages/1082.aspx?CategoryID=68&SubCategoryID=153

I hope this helps.
Take care
Love
Chris xxx

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Hi Nicky, yes, yes I think you should complain,loudly. As Daisy Girl says, make a fuss, those who shout loudest get heard.It very often hard for us to do that doesn’t come naturally always,but it sounds extrodinarily poor to say the least. good luck-and yell!

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How dreadful, yes you should make a complaint, its disgraceful. I hope something gets sorted out soon for you.

xxx

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Hi Nicky,
That’s awful, 10 weeks is much too long! If they can do everything else without you seeing the actual onfc then surely they can give you your results without him!

It’s pretty much pot-luck who I see, seems to depend upon who gets to my notes first! Mostly it does seem to be regisrars and obviously they are always changing. I have on a couple of occassions, when I really wanted to see the onc, have asked when I arrived at appt to see the onc herself and the nursing staff have made a note on my file and I have managed to see her, though usually with an even longer wait!!

BCNs for secs don’t exist at my hospital either.

On the whole I think your treatment is not acceptable and I would contact PALs.

Perhaps BCC could put some pressure on onc depts to provide more continuity of care for secs women - we need to see the same faces, pref the actual onc and support by specialist BCN would be helpful too!

Good luck - hope you get your results sooner!!

Love Juliexx

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Hello Ladies

I read this post with interest as I feel I too received poor ‘service’ this morning.

I’m chasing an onc appointment (not my ususal onc a different one) to discuss a new treatment plan as I’ve just received the news I have lung mets and enlarged nodes in my stomach. I’m investigating Avastin and my onc said his colleague will need to see me to discuss…fine if I can get an appointment! It’s been over a week since I was told a new appointment would be made and although I’ve made 3 calls I’m still waiting. This morning I spoke to one of the onc secretary’s and was told ‘there snowed under, were 2 consultants down and have holidays coming up plus there are more and more people to see’ now whilst I’m sympathetic and I understand the pressure the hospitals are under it made me feel worthless like I didn’t count, there righting me off because of my condition. I became quite upset when the secretary made these comments and I said that as I very poorly this appointment is crucial for me, she then had a sudden change of heart and said that she would personally speak to the onc when she was out of clinic. I’ll be ringing tomorrow and everyday thereafter to ensure my appointment comes through, sadly it seems if you don’t pursavere you simply slip through. Whilst I still have the strength I’ll be following this up every step of the way, I don’t intend on going anywhere without a fight!

Good luck to all pushing for appointments, scans etc…

XX

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Thanks everyone for your support and advice. I tried the onc’s secretary again Today. I asked for her by name and got put through to somebody else. She was actually very sympathetic, she accessed my notes and told me that there are NO appointments at all until the end of August. I explained how 10 weeks was an unacceptable wait and she completely agreed. I asked if I could access the results myself and she said that she would see if anybody could authorise faxing my results to my GP practice. She said she would get back to me…That was 11am!..guess what I am still waiting!! :o(

Claire - I have sent you a PM

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Oh Nicky, the service you have had is shocking. I can see either reg or onc, but can ask specifically to see onc and he is always available. Once he even phoned me at home to make sure I understood the treatment because he wasnt sure that he had been clear enough. His sec is very good and makes sure messages get through to him. Your wait of 10 weeks is rediculous as the scan results are already becoming history. I am waiting for mri, breast,and ct scan and I know these will be in next few weeks and results will be discussed the week after.
x sarah

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nicky your treatment is diabolical, i would complaine write to the head of your hospital… tell him/her exactley how you have been treated…ask why you have been treated this way… they by law have to investigate all complaints… in the mean time… you owe them nothing… i would seek out better treatment… perhaps transfer to another hospital… dont settle for second best…

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My honest answer is = NO DON’T COMPLAIN - VOTE WITH YOUR FEET, AND GO ELSEWHERE.
My opinion, for what it’s worth, is that the treatment you describe seems to be bordering on the negligent, and sounds like your medical team need a radical shake up. But you need decent treatment now, not at some period in the future if/when they change their practices. Also, don’t waste energy mounting battles that you might not win, when you could use it to to get the treatment you require.
I know others will say that if people don’t complain, nothing will change, but at this point you need to think about you, rather than taking on something that sounds like it has the potential to get quite messy.

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I’m inclined to go with Lemongrove’s suggestion as the last thing you need right now is a big battle. Your health and treatment are more important.

Make an appointment with your GP, explain what has been happening and ask for your treatment to be transferred to another hospital as soon as possible.

You can follow this up with letters of complaint etc when you have a treatment plan in place with a team who actually give a damn.

Nymeria x

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Unbelievable! I agree, definitely think about you and your treatment first … and get your treatment elsewhere. Maybe I’m lucky, but I always see my consultant or oncologist, never a registrar… in fact, my oncologist even called me at home!