Another awful day at chemo
I arrived early as transport arrived early but I bought tea and newspapers so wasn't at the unit much before 11 for my 11am appointment. I saw the consulatant about noon and she ordered my treatment about 1215pm. I saw the oncology pharmacist brought my chemo to the unit at 345pm and I started my treatment about 430pm after eventually being offered a recliner chair at 4pm after a receptionist found me one as the nurses said there weren't any (which was true in the short stay but there were 4 empty recliners in the long stay unit). I feel the nurses are so unsupportive to me. They told me again it was because I had a late appointment but this appointment was 1115 and my previous appointments have been at noon and 1245 and there were at least 8 women after me and all had their chemo before me. They told me it was done in time order when it clearly isn't. Pharmacy still prioritise primary women and so leaving us with secondaries to sit around in great pain for longer. The chairs are so unsuitable and I have resorted to bringing my own pressure relieving cushion and back support. I can't out my feet up so my ankles swell and I always end up in great pain so resort to oromorph and diazepam which I do not do at home usually. I feel the nurses are unsupportive and say it is because i have late appointments but as you can not make an appointment until after you have seen the consultant, so once you have a late appointment it is impossible to get an early one. Only the receptionists and research nurses give me support. The breast care nurses do nothing and the chemo nurses have been blunt and unhelpful and don't seem to believe I have pain. I left home just after 10 today and got home at 730pm. I waited 3 and half hours for the chemo to be made by pharmacy and then at least 45min after this and more like an hour to start the chemo so not finishing until after 630pm.
I was last to be seen by the chemo nurses and yet there were plenty of women who saw the doctors after me who were all had treatment before me.
I feel they have a duty of care to me and are failing. I have to bring in my own pressure cushion and back support, ther is nowhere for me to put my feet up. I can not lie on my side in chairs that are really like slightly padded dining chairs. I always end uo in so much pain that i have to take liquid morphine and diazepam which is something I rarely do at home now.
I have emailed yje chief executive of the hospital trust, Mark Hackett, the complaints manager, Lesley hobbs and my MP John Denham so if you wish to support me here is my letter and their email addresses - all googable so not broken any rules I think
Dear Mr Hackett, Mr Denham and Ms L Hobbs
Re Kathryn T, Hospital Number *****97, DoB 30th January
I am writing again to complain about the unacceptable delays I am experiencing at the chemotherapy clinic for breast cancer and breach of duty of care to me.
I wrote an official complaint letter to PALS in February 2006 and had a meeting via PALS with the Chief Oncology Pharmacist, Senior Oncology Pharmacist, Liz Hall, Senior Nurse - Cancer Care and Sister Helen from the chemo unit. I waited nearly 2 months for a reply after that meeting for a letter from Mr Hackett which is outside of the Guidelines for dealing with a Patient Complaint.
In the letter, it said the situation regarding the uncomfortable and unsuitable chairs would be resolved and that I could have early appointments to see the Oncologist due to my child care arrangements. None of this has happened. I am unable to get early appointments as you can only make an appointment after you have seen the oncologist meaning that those who start their treatment with early appointments always book those slots and there are none left for people with later appointments regardless of length of time the actual chemotherapy treatment is or the state of health that person is in. Having a late appointment ie one that is after 1030am means that I have an even longer time to wait to see an oncologist as the backlog in pharmacy and treatment areas have built up
In my consultation with Dr Nick Murray, Consultant Oncologist, on 8th January 2009, he informed me I have about 3 months left to live as I am now so frail and confirmed that I have a crumbling spine due to my bony secondaries. I also have bony secondaries in my left hip and pelvis so this all makes sitting very uncomfortable for me. The chairs in the chemotherapy waiting room, C3, are low backed chairs which do not support my back and infact, the back ends just at the most painful point in my spine. The department is unable to offer me a recliner chair or bed to rest my back. I am also prone to pressure sores and have to bring in my own pressure relieving cushion from the Hospice. I also suffer from swollen ankles and again, there is no facility for me to put my legs up.
Due to the Oncology Department's lack of patient care, I feel I am a victim of neglect and that the Department is failing in its duty of care towards me. Each week, I have to resort to taking oral morphine and diazepam as my pain is so great. I never need these at home or at the Hospice.
At my appointment on January 8th 2009, there were over 60 women waiting to be treated with only 3 nurses able to adminster the chemotherapy. I had a 1245pm appointment and there were no spare seats for me to sit on so I spent the day sitting in a wheelchair. Dr Murray saw my distress and saw me on time. I then waited until 5pm for a recliner chair to be free so that I could relieve my pressure areas and did not start treatment until after 530pm and finished at 8pm and so was not home till 830pm. This is unacceptable. I have avery limited life expectancy and getting home this late means I do not see my children on a thursday which adds to my distress.
On Thursday 15th January, my appointment was at noon. I was not see by an oncologist until 130pm and got into the treatment room at 430pm and finished about 630pm.
Today, Thursday 22nd January, my appointment was at 1115am. I was seen just after noon and my treatment was ordered approximately at 1215pm. By 4pm I could sit no longer. I had been to the cafe, the MacMillan Centre and had reiki at the Centre but was still in pain. The Pharmacy technician told me at 345pm that she had just taken my treatment into the short stay treatment room but I was told there were no spare chairs. I was in tears as I was in so much pain. The receptionist, Elaine, went to the long stay day unit and found me a recliner chair so I was able to lie on my side at 4pm. I did not start treatment till after 430pm and finished around 640pm. It was a much quieter clinic today so I do not understand why I was so delayed and was actaully seen last for my chemotherapy.
I would like the following questions answered -
1. Why am I having to bring in my own pressure relieving cushion?
2. Why after 2 years, the chair situation has not changed but my clinical condition has worsened considerably and that the unit is unable to supply adequate care to me to prevent my pain and contributes to the worsening of my spine as the chairs do not support my back and I can feel my spine crunching when I move my arms? It is putting me at risk of pressure sores and as there are no foot stools I always go home with swollen ankles.
3. Why are there such unacceptable delays between seeing the consultant and actually having the chemotherapy. Today, I was the last one into the chemotherapy treatment area and my treatment was made up a long time after others who saw the consultants after me. I was told it was done in time order but this is clearly not my experience at all.
4. I realise the nursing staff are very pressurised and I am constantly amazed by how cheerful they are and they keep working for your Trust but increasingly, I am finding them unsupportive towards me by saying that it is because I have late appointments so what else could I expect. As I explained once in the system it is almost impossible to get an early appointment. I feel unbelieved by the nursing staff that I am in pain and am offered no support from them or help to relieve my pain. The people who try to help me are the receptionists and research nurses. I get no help or support from the Breast Care Nurses and the chemo treatment nurses are too busy.
5. I do not understand why it takes pharmacy nearly 4 hours to prepare my chemo and yet others are prepared much quicker.
6. I have not had a break from attending this thursday clinic since my diagnosis in April 2005. The longest break I have had has been 4 weeks and some of this has been due to me being in hospital or the hospice. Even when I had 9am appointments, I was often not leaving till after 4pm and the situation has worsened. Why are clinical needs not taken into consideration in allocation of appointments?
7. I see other women there who look in pain and are also waiting for as long as me. Why are we not given priority when we have other health issues to contend with? Why when we are far sicker when we have developed secondaries are we put further down the pile of priorities when the women with a primary diagnosis are given priority in pharmacy and treatment area so receive their treatment quicker even though they are not as ill or in pain.
I await your reply with interest.
Yours sincerely
Kathryn T
I'm just too disillusioned to write more - but I am sure I've written on this blog and the forums about my awful days at chemo so there's loads of ammo but I'm just too knackered to write a better complaint. it's not to my usual standard of writing I know. If you feel you could fire off a quick email to one of the following people please can you. I can not fight this alone any longer and just do not know where to go for support and help. I was told by the Chairman of the Trust Board that the Chief Executive, Mark Hackett wants to know the problems in the hospital and is happy to receive emails. Ideally, I would like to multimail him and fill his inbox but that does not seem right but even the Chairman knew about the problems in the chemo unit so why has nothing changed?
Even if you feel you can only copy and paste my letter to one of the people below I would be grateful for your support
John Denham - MP -
john@johndenham.org.uk
mark.hackett- chief executive
mark.hackett@suht.swest.nhs.uk
LesleyHobbs - complaints manager
lesley.hobbs@suht.swest.nhs.uk
When I got home the heating and hotwater now work but we needed a new thermostat and timer so dread the cost but also got a letter from the benefits people who want me to send off various paperwork to a local benefits office to process my employment suppost assisatnce money. I really don't want to send off my birth certificate etc. just wish I could go down there instead. Still gives no idea how much money i will get or when I will get it - just keeps saying it will be backdated to 19th january and so can't apply for grants etc until know what this is and tax credits won't do anything until get final payslip and they think we;ve ernt too much in this tax year but will get more after the new tax year in april so will be living off fresh air then.
So unhappy tonight.
Trust Management Offices
Mailpoint 18
Southampton General Hospital
Tremona Road
Southampton
Hampshire SO16 6YD
On a slightly different note, the registrar asked if she could talk about me to medical students and GPs to show that there is life after a diagnosis of secondaries although she did say I was rather at one extreme as regarding what I did and how much chemo i had. Oh well, as my school best friend recently quoted from Lady and the Tramp "sure - always glad to oblige"!!!
I arrived early as transport arrived early but I bought tea and newspapers so wasn't at the unit much before 11 for my 11am appointment. I saw the consulatant about noon and she ordered my treatment about 1215pm. I saw the oncology pharmacist brought my chemo to the unit at 345pm and I started my treatment about 430pm after eventually being offered a recliner chair at 4pm after a receptionist found me one as the nurses said there weren't any (which was true in the short stay but there were 4 empty recliners in the long stay unit). I feel the nurses are so unsupportive to me. They told me again it was because I had a late appointment but this appointment was 1115 and my previous appointments have been at noon and 1245 and there were at least 8 women after me and all had their chemo before me. They told me it was done in time order when it clearly isn't. Pharmacy still prioritise primary women and so leaving us with secondaries to sit around in great pain for longer. The chairs are so unsuitable and I have resorted to bringing my own pressure relieving cushion and back support. I can't out my feet up so my ankles swell and I always end up in great pain so resort to oromorph and diazepam which I do not do at home usually. I feel the nurses are unsupportive and say it is because i have late appointments but as you can not make an appointment until after you have seen the consultant, so once you have a late appointment it is impossible to get an early one. Only the receptionists and research nurses give me support. The breast care nurses do nothing and the chemo nurses have been blunt and unhelpful and don't seem to believe I have pain. I left home just after 10 today and got home at 730pm. I waited 3 and half hours for the chemo to be made by pharmacy and then at least 45min after this and more like an hour to start the chemo so not finishing until after 630pm.
I was last to be seen by the chemo nurses and yet there were plenty of women who saw the doctors after me who were all had treatment before me.
I feel they have a duty of care to me and are failing. I have to bring in my own pressure cushion and back support, ther is nowhere for me to put my feet up. I can not lie on my side in chairs that are really like slightly padded dining chairs. I always end uo in so much pain that i have to take liquid morphine and diazepam which is something I rarely do at home now.
I have emailed yje chief executive of the hospital trust, Mark Hackett, the complaints manager, Lesley hobbs and my MP John Denham so if you wish to support me here is my letter and their email addresses - all googable so not broken any rules I think
Dear Mr Hackett, Mr Denham and Ms L Hobbs
Re Kathryn T, Hospital Number *****97, DoB 30th January
I am writing again to complain about the unacceptable delays I am experiencing at the chemotherapy clinic for breast cancer and breach of duty of care to me.
I wrote an official complaint letter to PALS in February 2006 and had a meeting via PALS with the Chief Oncology Pharmacist, Senior Oncology Pharmacist, Liz Hall, Senior Nurse - Cancer Care and Sister Helen from the chemo unit. I waited nearly 2 months for a reply after that meeting for a letter from Mr Hackett which is outside of the Guidelines for dealing with a Patient Complaint.
In the letter, it said the situation regarding the uncomfortable and unsuitable chairs would be resolved and that I could have early appointments to see the Oncologist due to my child care arrangements. None of this has happened. I am unable to get early appointments as you can only make an appointment after you have seen the oncologist meaning that those who start their treatment with early appointments always book those slots and there are none left for people with later appointments regardless of length of time the actual chemotherapy treatment is or the state of health that person is in. Having a late appointment ie one that is after 1030am means that I have an even longer time to wait to see an oncologist as the backlog in pharmacy and treatment areas have built up
In my consultation with Dr Nick Murray, Consultant Oncologist, on 8th January 2009, he informed me I have about 3 months left to live as I am now so frail and confirmed that I have a crumbling spine due to my bony secondaries. I also have bony secondaries in my left hip and pelvis so this all makes sitting very uncomfortable for me. The chairs in the chemotherapy waiting room, C3, are low backed chairs which do not support my back and infact, the back ends just at the most painful point in my spine. The department is unable to offer me a recliner chair or bed to rest my back. I am also prone to pressure sores and have to bring in my own pressure relieving cushion from the Hospice. I also suffer from swollen ankles and again, there is no facility for me to put my legs up.
Due to the Oncology Department's lack of patient care, I feel I am a victim of neglect and that the Department is failing in its duty of care towards me. Each week, I have to resort to taking oral morphine and diazepam as my pain is so great. I never need these at home or at the Hospice.
At my appointment on January 8th 2009, there were over 60 women waiting to be treated with only 3 nurses able to adminster the chemotherapy. I had a 1245pm appointment and there were no spare seats for me to sit on so I spent the day sitting in a wheelchair. Dr Murray saw my distress and saw me on time. I then waited until 5pm for a recliner chair to be free so that I could relieve my pressure areas and did not start treatment until after 530pm and finished at 8pm and so was not home till 830pm. This is unacceptable. I have avery limited life expectancy and getting home this late means I do not see my children on a thursday which adds to my distress.
On Thursday 15th January, my appointment was at noon. I was not see by an oncologist until 130pm and got into the treatment room at 430pm and finished about 630pm.
Today, Thursday 22nd January, my appointment was at 1115am. I was seen just after noon and my treatment was ordered approximately at 1215pm. By 4pm I could sit no longer. I had been to the cafe, the MacMillan Centre and had reiki at the Centre but was still in pain. The Pharmacy technician told me at 345pm that she had just taken my treatment into the short stay treatment room but I was told there were no spare chairs. I was in tears as I was in so much pain. The receptionist, Elaine, went to the long stay day unit and found me a recliner chair so I was able to lie on my side at 4pm. I did not start treatment till after 430pm and finished around 640pm. It was a much quieter clinic today so I do not understand why I was so delayed and was actaully seen last for my chemotherapy.
I would like the following questions answered -
1. Why am I having to bring in my own pressure relieving cushion?
2. Why after 2 years, the chair situation has not changed but my clinical condition has worsened considerably and that the unit is unable to supply adequate care to me to prevent my pain and contributes to the worsening of my spine as the chairs do not support my back and I can feel my spine crunching when I move my arms? It is putting me at risk of pressure sores and as there are no foot stools I always go home with swollen ankles.
3. Why are there such unacceptable delays between seeing the consultant and actually having the chemotherapy. Today, I was the last one into the chemotherapy treatment area and my treatment was made up a long time after others who saw the consultants after me. I was told it was done in time order but this is clearly not my experience at all.
4. I realise the nursing staff are very pressurised and I am constantly amazed by how cheerful they are and they keep working for your Trust but increasingly, I am finding them unsupportive towards me by saying that it is because I have late appointments so what else could I expect. As I explained once in the system it is almost impossible to get an early appointment. I feel unbelieved by the nursing staff that I am in pain and am offered no support from them or help to relieve my pain. The people who try to help me are the receptionists and research nurses. I get no help or support from the Breast Care Nurses and the chemo treatment nurses are too busy.
5. I do not understand why it takes pharmacy nearly 4 hours to prepare my chemo and yet others are prepared much quicker.
6. I have not had a break from attending this thursday clinic since my diagnosis in April 2005. The longest break I have had has been 4 weeks and some of this has been due to me being in hospital or the hospice. Even when I had 9am appointments, I was often not leaving till after 4pm and the situation has worsened. Why are clinical needs not taken into consideration in allocation of appointments?
7. I see other women there who look in pain and are also waiting for as long as me. Why are we not given priority when we have other health issues to contend with? Why when we are far sicker when we have developed secondaries are we put further down the pile of priorities when the women with a primary diagnosis are given priority in pharmacy and treatment area so receive their treatment quicker even though they are not as ill or in pain.
I await your reply with interest.
Yours sincerely
Kathryn T
I'm just too disillusioned to write more - but I am sure I've written on this blog and the forums about my awful days at chemo so there's loads of ammo but I'm just too knackered to write a better complaint. it's not to my usual standard of writing I know. If you feel you could fire off a quick email to one of the following people please can you. I can not fight this alone any longer and just do not know where to go for support and help. I was told by the Chairman of the Trust Board that the Chief Executive, Mark Hackett wants to know the problems in the hospital and is happy to receive emails. Ideally, I would like to multimail him and fill his inbox but that does not seem right but even the Chairman knew about the problems in the chemo unit so why has nothing changed?
Even if you feel you can only copy and paste my letter to one of the people below I would be grateful for your support
John Denham - MP -
john@johndenham.org.uk
mark.hackett- chief executive
mark.hackett@suht.swest.nhs.uk
LesleyHobbs - complaints manager
lesley.hobbs@suht.swest.nhs.uk
When I got home the heating and hotwater now work but we needed a new thermostat and timer so dread the cost but also got a letter from the benefits people who want me to send off various paperwork to a local benefits office to process my employment suppost assisatnce money. I really don't want to send off my birth certificate etc. just wish I could go down there instead. Still gives no idea how much money i will get or when I will get it - just keeps saying it will be backdated to 19th january and so can't apply for grants etc until know what this is and tax credits won't do anything until get final payslip and they think we;ve ernt too much in this tax year but will get more after the new tax year in april so will be living off fresh air then.
So unhappy tonight.
Trust Management Offices
Mailpoint 18
Southampton General Hospital
Tremona Road
Southampton
Hampshire SO16 6YD
On a slightly different note, the registrar asked if she could talk about me to medical students and GPs to show that there is life after a diagnosis of secondaries although she did say I was rather at one extreme as regarding what I did and how much chemo i had. Oh well, as my school best friend recently quoted from Lady and the Tramp "sure - always glad to oblige"!!!
posted by dippykate @ 11:01 PM
3 Comments:
At 7:36 AM ,
SassieVicar said...
Kate, if you can find the energy, may I suggest that you send a follow-up letter/email to all those you've written to, saying that if you don't receive a satisfactory response to your complaints by February 5th you will go to the press? (You may want to state that the deadline is quite soon, but at your stage of life, every day counts.)
So sorry you're being treated like this.
Sass xx
At 4:31 PM ,
Anonymous said...
Kate, I have forwarded your letter to mr Hackett, urging him to look into the matter asap.
My heart goes out for you.
Love,
Cavabien
At 9:44 AM ,
jayne said...
Kate , I have written to Mr Hackett - hope some action is taken immediately - good luck,jayne
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