re treatment put back.: HI Ladies, I hope everyone... - OvaCare

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re treatment put back.

21 Replies

HI Ladies, I hope everyone is feeling as good as you can do and you were able to get out in the bright weather today. I commented here in another post last evening how my treatment had been deferred to next week per phone call. I was away got back last night so decided to ring Oncology ward to see why it had been deferred, ye will be just shocked with the answer. The Unit was busy so two or three patients moved back until next week. I know the system is overloaded but surely cut backs should not be applied to Cancer Patients or Ovarian Cancer Patients. Thursday is the Avastin day where I attend for treatment. I would imagine that some research went into this and the more urgent patients seen today and I have no problem with that. But this is something that shouldnt be happening in our Oncology Units. This is the HSE at its worst. To say I am shocked is putting it mildly, Now this means that my rota is out of sync and my next scan which was scheduled to coincide with treatment is also gone adrift. I will leave it to the Oncology Unit Secretary to try and sort that out next week, and hopefully my scan can be rescheduled as I accomodated them. What is Leo our Minister doing or is he aware at all that this is happening. Does our local Junior Minister have any idea of the increase in patient numbers and the staff shortages in the hospitals here in Cork. Any ideas as to how I can make noise without involving the already overworked and stressed staff would be appreciated. I assume these decisions are taken in consultation with the consultant.

21 Replies
daisies profile image
daisies

Suzuki - I agree with you, that postponing any regular treatment, whether for cancer or not, is disgusting. We always seem to blame the person at the top - i.e the relevant Minister - but we forget the neglect that persisted over endless years of waste. Most public hospitals here are overrun with management; "folder carriers ", general staff who do not seem to have any purpose, except 'swan' around. The above might seem harsh but we all have been at the receiving end of health services waste.

While it is hard, when something like that happens - the only thing is that you must believe that a really urgent case came up - and we have all been that case.

If you decide to write to Minister or local politicians - don't fret too much about current staff; nurses and doctors; as they have to have the brunt of our complaints but cannot really say anything out of order to you.

I hope it didn't take the enjoyment and relaxation from your holiday though.

I would suggest you contact your Onc and ensure that your next scan is done before you are due to see him for review.

Chat soon. Daisies

in reply to daisies

Hi Daisies, I will mention it to him when I see him next. I have scan listed for 15th to match Avastin day so I will ask admin to try and get that changed for me for the 22nd, I am back again then to the Prof in November for result. I dont blame the girls inside, they dont ever have a break and are always on the go. They work brilliantly as a team and they all jel together. I agree money is being squandered on the wrong things and in the wrong area. I am also going to say it to my gp in the next few weeks. As you say there was probably someone more needy and I could be that person someday too, I dont want to rock the boat especially as one of the team got her friend to come and look after the doggies while I was away. But then again, these are two different issues. I think Kathleen Lynch needs a good shake though

marymarcy profile image
marymarcy

That's awful Joan, the whole bloody thing is hard enough without 'administrative ' rearranging. Hope all ok apart from that. X

in reply to marymarcy

Hi Marymarcy, the admin blamed it on the nurses, I was geared up to go in this morning and planned a break to come home last night in time. The nurses often say the number of patients have increased but the staffing level has not and that isnt fair on them at all. I am going to mention it to the oncologist when I see him in November. I know there were probably more ill patients to be seen this morning and I dont mind that but really everyone has a right to fair treatment, I hope your Mum is doing as well as can be expected and that you are able to manage somehow,

marymarcy profile image
marymarcy in reply to

It's very unfortunate whatever the reason. To be honest in some ways i wonder that the nurses manage as well as they do to juggle patients, they must be under such pressure. Mam has had last minute drainage when she has ran into difficulty which has been great, she has never had a chemo postponed like yours was so i hope no one was postponed to facilitate her. Mam doing ok, pretty independent right now thank God, long may it continue.

Take care Joan

Mary x

in reply to marymarcy

HI Mary that is good to hear that your Mum is doing okay. They said there was an overload so two more besides me moved to next week. If the treatment is supposed to be every three weeks as some one has mentioned, then is it still effective having it on the fourth week ? I acknowledge I am doing okay and that there are people more ill than me, But it seems the system is bursting at the seams. I will nicely ask the nurse next week, if complaining to the hospital CEO any use or help to them, I know they are run off their feet yet in the day ward when I had scope a few weeks ago, three nurses to two patients that morning. Some one really getting in wrong it would appear.

Taichipat profile image
Taichipat

, Its no better here. I am at The Christie in Manchester and the volume of patients to staff is incredible. If you get a late appointment (4.15 p.m.) you can more or less forget it. I went yesterday for my scan results (I have an hour and 20min journey). Said on time but then came up running on hour late, which actually turned out to be 2 quarter hrs. So it was 6.30 p.m. when I got to see Consultant who by then was wrapping up. So didn't get an adequate appointment just confirmation I had progressive disease which I already suspected from the rapidly rising blood markers and pain and discomfort. Oh but got a leaflet on my next intensive treatment of Cisplatin and Gemcitabine. Wish someone would have just handed that to me before so I could have just gone straight home. It is not the staffs fault they are so overworked but the high volume of patients. Was not happy yesterday and I am still not. I sympathise with you but don't see an answer.

in reply to Taichipat

HI Pat, that was actually worse, just being handed a leaflet and more or less told to get on with it. I had the Gem, I found it okay first time around as I got steroids. My last course was Gem again with Avastin and my white cells took a bashing. Gem has alcohol in it so when I went home I had the shakes after it. So I demanded steroids which I eventually got and they also reduced the amount of Gem. The treatment worked. I wish you well with your treatment. I cant see anyway out of it either. it is not the staffs fault, bad management. When I had a scope a few weeks back one other patient with me, two nurses in day ward and the cns so that was overstaffed at that time.

Whippit profile image
Whippit

Hi Joan

It really is unacceptable to delay patients' chemotherapy and I would imagine that would really upset many patients because we're led to believe the 3 week gap between treatments optimises the effect of the treatment. Having said that now I'm on third line and it seems to be working OK I have delayed chemotherapy if it clashes with something I want to do and it suited my hospital as they were struggling to fit patients in around one of the bank holiday weekends. For the hospital to delay a whole load of appointments must create a massive load of extra work for the bookings team to rearrange scans and appointments and then contact the patients.

Your post took me back 3 years when I abandoned the Welsh NHS to be treated in London. I felt, like you, that no blame should be apportioned to the staff who were clearly working in appalling conditions at my centre in Cardiff. I asked for an appointment with the General Manager of the hospital to learn what the issues were and what I could do as a patient to lobby the Government or senior people in the Health Board. We had a really productive meeting and I understood a lot more about the issues that were impacting on the hospital. In our case it is largely that in Wales there has been an 8% reduction in funding for cancer services over 5 years, failure to upgrade equipment, and I learned that senior staff were critical of the funding model in Wales. It was a helpful meeting because when I do speak up at various meetings I'm in line with the general views of hospital managers, etc. I discovered at the All Wales Conference on Cancer this week from a member of staff in one of the workshops that the radiotherapy machines are so out-dated in Cardiff that they break down regularly and patients appointments have to be delayed while the machines are fixed. I was open-mouthed hearing about that. As patients with ovarian cancer we don't generally have any experience of radiotherapy but there are patients who have to go daily for treatment and it's just unacceptable to have 2 out of 3 machines out of action. The staff are unable to get the equipment replaced so a timely intervention by a patient or group of patients in the right place and at the right time might well help.

Having got some hard facts it has been much easier to lobby the Government of Wales and speak up at various conferences or consultative meetings. If you feel you can get involved it can be very worthwhile to join the lobby. The hospital staff like nothing better than a well-informed patient to say it as it is.

Is there a Patient Liaison Group in your hospital. It might be worth joining that. You should certainly write a letter to the CEO expressing your concerns whilst ensuring you commend the staff for the way they're working to overcome the problem.

I shall look forward with interest to hearing how you get on. Over the years I've compared notes and shared ideas with patients who are active lobbyists in N Ireland, Scotland and England. It would be great to link up with anyone in Southern Ireland who's doing the same.

Best of luck. xxx Annie

in reply to Whippit

Hi Annie, I really will write to the CEO. Well if my scan mid October shows change, I shall be kicking up the dust. All in all, I have been very lady like all along especially when my former gynae made a huge error. Having the scope a few weeks back, the theatre nurse said to me, "You had a rough ride in this hospital" I was non committal and then the consultant told me that he had met my gynae in the car park and he nevers attends the hospital now, Very suspicious to say the least. So I held tough. So the scope being clear showed that my bowel was never involved as the first guy maintained many years ago. I only see the onc now and my gp referred me for the scope but all I had was piles which were done there and then and oh the relief. I will see if there is a patient liason group in the hospital also, that is another good idea thank you. I know my two years are almost up anyhow but that is not the point. I am a patient and should be considered as important as the person before me and after me. Thanks again Joan

Cathanne profile image
Cathanne

Suzuki,

I'm horrified to hear the reason for the date change but not surprised that overcrowding is responsible. We have discussed it often enough. Annie's letter reminds me of all the letters I have composed to that CEO in my head and never written! Time to get writing.

Silver lining is that I'm due in next Thursday so we'll meet up! Unless I'm put back a week , of course.

Enjoy the sunshine, Miriam

in reply to Cathanne

Hi Cathanne, I was walking in the sun in Malaga when the mobile rang but I have no roaming and Grainne had cut off everything as I am hopeless so I texted her to ring the hospital. So they said they were deferring treatment until next week if that was okay. I rang the Secretary yesterday and asked why and she said they had to put two more back a week as they were overcrowded yesterday. I did actually fill in some comment form on the hospital website to the CEO about the huge wait before but got no reply. The staff are overstretched to the limit and they work under horrendous conditions, no wonder they cant recruit more staff. As you said every cloud has a silver lining so will see you next Thurs, I am not in until half eleven. I will explain my prob about the scan to the Secretary and leave it to her to see if I can have it on the 22nd. Well the liason nurse said before appointments can be changed and never worry so they made the problem so they sort it internally themselves. I am back to onc in November for the result. I will bring up the change to whoever I get next week and ask what can I do as a patient to make it better for them and us,

how upsetting Suzuki, I'm really shocked that anyone would take those vital resources away from onchology - its a difficult enough to prepare yourself to go for treatment emotionally and then to be knocked out of sync is really stressful on the patient.

I'm just wondering Would us OvaCare members have any influence- if we got a statement from us patients who are members of Ovacare who demand to be prioritised for succinct schedules - this in turn will be a formal letter given to Director of the hospital or the main ontologist -or go broader ??

Im supposing that the real issues is relating to over subscribed patients for amount of nursing /oncology staff & facilities in oncology which is a possible a workload and facility issue. Im sure then nurses would be on board as they are extremely hard workers.

Would a solution to the problem be to work weekends ?

It good that you are bringing it up as it might prepare us if we encounter it ourselves.

thanks and hope you get sorted with your appointments soon

Sinead

in reply to

Thanks Sinead, I do hope that this decision to move me was taken with the onc s approval, knowing the CNS she is very much into protocol so she would go through it with him first. I will be seeing him in November anyhow have scan due in October. I cannot get a clear picture of when they stop the Avastin, it seems to be on a case by case basis. The Reg was for stopping it in August but I spoke up so she consulted the onc and he said continue. I am told it could be two to two and a half years. Reading an article lately I got the impression you treat being on Avastin as being in remission, But you do get side effects so I cant see for the life of me how you can have a full life while you are on it!!! At the moment my feet are hurting a little and I wear supports and that helps a bit. I should really see my gp, but he loves sending me for referrals. But I need my blood pressure meds renewed shortly so will go and will mention feet and also my deferred appointments. A few years back, I had a huge problem in being diagnosed with recurrence in this particular hospital and I never complained, I was too wrecked emotionally and physically but what didnt kill me made me stronger so the dust will rise this time.

Connie8 profile image
Connie8

I agree totally Suzuki . Survival rates increasing thankfully but staffing levels 2 meet demands are not increased sufficiently . I have been in contact with my local TD an have written 2 Minister for Health also. Got replies from both . I also raised the issue of screening for O/C . We all need 2 become more proactive if not for ourselves we need 2 fight for every other woman . . On this beautiful morning life is wonderful . 😃

in reply to Connie8

I wrote to the Minister and he was to get back to me re staffing levels. I also wrote the the nice guy who went for a trip in the garda car to Dublin Airport last week, he never got back to me. They cant get the staff to work under the horrible conditions in our hospitals. They are stressed and stretched to the limit. They are recruiting but no one in their right mind wants to return fom Australia where working conditions are ideal and also prospects for further learning are encouraged to our Irish trained young people. Yes on a lighter note, today was beautiful and bright I agree. I will speak to the nurses next week and see what they feel would help Thanks for the support

kittie profile image
kittie

Hi Suzuki. I agree with the other Ladies it is an utter disgrace to cancel any cancer patients treatment due to overcrowding . I do not know how big your day unit is but where I go it only holds 14 patients at any one time, there are 2 over flow rooms but are seldom used due to nurse shortages something has to be done. At least I hope you enjoyed your break you brought the fine weather back with you. Take care. Kittie.

annieH1 profile image
annieH1

Hi Suzuki,glad you got back safe ,it's a bummer to come home to a deferred app.,though.Your right about the Onc unit,it's getting worse.my app for chemo was 10am the last day and I was eventually called at 1.45.

I think it's about time there was some patient/ management/ multi disp team meetings.These delays will only get worse,unless someone shouts "enough".I feel so sorry for the nursing staff in he unit ,as they are working under very difficult situations.I think the welfare of the patient is kinda swept under the carpet when it comes to management.

The patients diagnosed with cancer and requiring treatment is rising daily and there doesn't seem to be any agenda to deal with this.I had my treatment 2 times with 4 weeks interval (Avastin),not sure if it had any dire consequences for me but I'm meeting the prof on Friday and I'll ask if it could have contributed to the progression.

I think it might be a good idea to get Ovacare and the Irish cancer society involved regarding treatments.Leo really hasn't much to do with local management and as for K.Lynch forget it,the moon and stars will be promised to all of us as elections approach but once elected,we'll be back to our own devices and our own fight.xx

Hi Annie, Glad you got back safe and sound, all the excitement happened when we came back. Noel hubby had a hard time at the airport security, it was like an episode from Nothing to Declare, luckily enough, Aer Lingus offered to take our hand luggage free gratis in the hold so that was gone at his search. They had tapes and were sticking them here there and everywhere and the machine kept blinking. Eventually the third time he was let free. I was laughing and told them he was harmless. Of course he rolls his cigs so that was prob causing the machines to go off. Reading on the paper today, it seems one of the costa criminals shares our surname but I promise you no relation. I have checked there is a complaints office in the hospital but not sure if that if how I want to approach this. I will speak up when in on Thursday and see how any protest from me would help the staff. I will also mention it to the Prof when I see him. I have a scan in October and back for review in November. Of course the saga about our Junior Minister hasnt helped my humour. I am not in his constituency but I attend a practice in his constituency. I have complained about the pressure the nurses are under and he was taking it up with the Minister but heard nothing back. I will check as well to see if there is a patient advocacy in the hospital but so far have had no luck. My friends son went that way when she was being messed around and she was never messed around again but that was in Tallaght. There is a patient advocacy group in Dublin. However, this cannot continue either, it is not fair on the nurses or the patients. Hope you were able to enjoy some of the lovely sunshine and heat when you were well enough. Best wishes

marn profile image
marn

Hi Suzuki,I am not surprised that your treatment was postponed because the unit was just too busy. It seems like it is just getting more and more difficult to get basic oncology care all the time due to staff shortages and patient numbers.The girls are so busy sometimes that I feel I can not eat into their time to ask questions. I agree that the nurses do a fantastic job but it is very important that they too are very vocal about how bad the situation is.If a unit is unsafe or not delivering a high standard of care due to staff shortages then nursing management should be alerted and it should also be put in writing.I sometimes think it is only a matter of time till something bad happens on one of these units. I am so grateful for these fantastic nurses and thank god we have people who care so much.I am still horrified by the fact that I am told that I have to wait three weeks or more to start chemo when I relapse.We as cancer patients do not need the added stress of this.Take care.

I agree with you Connie, I know the girls are so good and kind and never take a break, surely this is a safety risk in itself. I have heard since that despite the three deferrals, it was mad. One lady who is fairly ill was also having a scan so she did the usual got the drink and came over, had the drink and still waiting so was sent back for ct and had to return back for whatever treatment she was having. I think this was worse as she was fasting all the time and it couldnt have been good for her. That did happen me one day and I took little notice just stopped at the cafe for tea and toast on the way back and met a hunky doctor. Pity he was young enough to be my son haha. But you have to have a sense of humour in our situations. I can see the CNS runs the unit like clockwork, its not her fault nor is it any of their faults. Its bad hospital management, I will see tomorrow if making noise would help them and us. I have always been fairly passive, some might say too passive but if anything can help them, I would certainly try it . It must be hard waiting for your treatment to start once you have the first one, its not so bad, I think one down and less to do. My scan is mid October to coincide with my treatment on that day so treatment not now till a week later. Back for review in November. Maybe I am better letting it like that, will ask them that tomorrow as well. Well the liason nurse says appointments for scan can be changed so will wait and see. Wishing you the best in your treatment.

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