Wednesday, 27 March 2013

Never Under-estimate a Patient Survey







Q11. When you were first told that you had cancer, had you been told you could bring a family member or friend with you?

1.    Yes
2.    No
3.    It was not necessary
4.    I was told by phone or letter
5.    Don’t know/ can’t remember

When I received my results from my first lot of biopsies in September 2009 at Ealing hospital I had my five year old daughter with me. This was because it was the summer holidays and being new to London I knew no-one who could help. It would have been nice if someone had taken my young daughter to one side whilst it was explained, but no attempt was made. I was in tears and my young daughter was the one consoling me.
My diagnosis of recurrence in July 2012 by same BC nurse was done over the phone. It was an urgent phone call to get me back to Ealing hospital the following day.

Q14. When you were told you had cancer, were you given written information about the type of cancer you had?

1.    Yes, and it was easy to understand
2.    Yes, but it was difficult to understand
3.    No, I was not given written information about the type of cancer I had
4.    I did not need written information
5.    Don’t know/ can’t remember

At no point have I been given information on the type of cancer I have. The type of cancer was discussed verbally and then I was left to do the research on the internet to fill in the gaps. The mastectomy took place at Charring Cross hospital October 2009. I requested my results a year later and that is how I found out there was a question mark to the possibility of micro invasion. This I believe lead to my recurrence as my treatment in 2009 did not involve radiotherapy or any other treatment as mastectomy and recon was supposed to be sufficient.

Q16. Do you think your views were taken into account when the team of doctors and nurses caring for you were discussing which treatment you should have?

1.    Yes, definitely
2.    Yes, to some extent
3.    No, my views were not taken into account
4.    I didn’t know my treatment was being discussed by a team of doctors/nurses
5.    Not sure/ can’t remember

On consultation I mentioned my veins were not happy and would like a port fitted I was ignored. It is clearly written on my medical notes that my veins are hard to access. The consultant said I had juicy veins. I found his reply/attitude to my request very manipulative and condescending. It was more what he wanted rather than patient comfort.

On the first cycle of chemotherapy the vein used instantly reacted to FEC 75 and started to shut down. The nurse administering the FEC took three hours and said she would make a note and pass it on for a port request. If this side effect was rare I would understand, but it isn’t for FEC.
On returning to clinic 8 for my review before having my next cycle to be told to grit my teeth by a registrar for the next chemo was again inexcusable and inappropriate language to be used. On examining my arm you could clearly see an issue was developing. Apparently there was no mention in my notes of the nurse request. It was also mentioned by the registrar, he did not understand why a port was not fitted before treatment started because I would be receiving a year of Herceptin infusions.

After my second cycle and again the vein shutting down I was told by nursing staff in clinic 6 to ring my consultant if I hear nothing about a port being fitted. Ten days later as instructed I had to ring my consultants’ secretary leaving a message asking if they could chase the port up. Two days later I received a phone call to have my port fitted. I strongly question the fact that a patient should have to phone when it should be clearly communicated between staffs that a problem is there. Thanks to all of this I developed Thrombophlebitis of the right fore arm which should never occur. I understand that FEC damages the veins, but I’m a type 2 diabetic and my circulation is important. And not once has anyone taken the effect of this treatment and my diabetes into account. In fact it has been left to me to shout which is wrong.

On returning to clinic 8 for review for the third cycle of FEC I again had to wait one hour and thirty minutes. When I was eventually seen it was by a nurse not a registrar. Clinic 8, were unaware that I had developed a nasty case of Thrombophlebitis because I had received treatment at Northwick Park Hospital. I had tried to get help at Charing Cross via a phone call, but was told by the emergency Oncologist on call that I did not have an issue. Thankfully I saw sense and went to Northwick for a second opinion as the problem was getting worse. At clinic 8 without checking me over they said I did not need to see the registrar and everything was fine. I angrily protested in the clinic at my treatment thus far and went down to A&E. The excuse clinic 8 gave to A&E was I had missed a couple of my appointments. My reply was pull CCTV footage it will tell a different story, so no my opinion is not taken into account because all this mess was preventable from the very beginning.

Q21. Were you given the name of a clinical nurse specialist who would be in charge of your care?

1.    Yes
2.    No
3.    Don’t know/not sure

At no point in Charring Cross hospital have I received a clinical nurse. When enquiring about anything I have been told I must speak to my consultant or BC nurse at Ealing hospital, but they are not treating me Charring Cross is. When turning to my BC nurse at Ealing hospital I have been told to vent my concerns to Charring Cross hospital.

I have received zero emotional support or reassurance from any medical staffs at either hospital for eight months now.

Q27. Did hospital staff give you information about how to get financial help or any benefits you might be entitled to?

1.    Yes
2.    No, but I would have liked information
3.    It was not necessary
4.    Don’t know/ can’t remember

The Maggie Centre has been my means of support throughout my treatment. When I needed help to ease the impact travel had, they arranged a grant payment from Macmillan. At no point was I told by my BC nurse or any staff members at either hospital I could receive financial help. It fell down to another breast cancer patient and a Maggie representative to help.

Q28. Did hospital staff tell you that you could get free prescriptions?

1.    Yes
2.    No, but I would have like information
3.    It was not necessary
4.    Don’t know/can’t remember

Thankfully I already receive free prescriptions because I’m diabetic, but again I only found out recently when filling in the Macmillan grant form that I could receive help. Considering my journey with breast cancer started in 2009 again the information should be made clear to patients.

Q58. Did hospital staff do everything possible to control the side effects of chemotherapy?

1.    Yes, definitely
2.    Yes, to some extent
3.    No, they could have done more
4.    I have not had any side effects from chemotherapy
5.    I have not had chemotherapy

My reason is explained in Q16.

Q60. While you were being treated as an outpatient or day case, were you given enough emotional support from hospital staff?

1.    Yes, definitely
2.    Yes, to some extent
3.    No, I would have liked more support
4.    I did not need emotional support from staff

As a day patient Registrar’s do not know who should be responsible for my emotional care especially when being treated by two hospitals. As a patient I have been sent on a mouse chase for something that should be there without an issue. I understand this could fall down to finance rather than patient care. Hospitals work on a budget and the explanation given is I am an Ealing hospital patient.

Q62. The last time you had an appointment with a cancer doctor; did they have the right documents, such as medical notes, x-rays and test results?

1.    Yes
2.    No
3.    Don’t know/can’t remember

At my last appointment in clinic 8 I was left for one hour and thirty minutes until I approached the reception desk. It was explained I would be seen by the nurse shortly. After seeing the nurse and being in the clinic for now two hours I saw the registrar. He apologised for the long wait and explained they could not find my notes. I could not ask the registrar any questions about my care because he had never seen me before and had zero knowledge of my history.

Q66. Have you had treatment from any of the following for your cancer?

1.    Physiotherapist
2.    Occupational therapist (OT)
3.    Dietician
4.    Speech and language therapist
5.    Lymphoedema specialist

The above question is laughable to me because I requested a Physiotherapist for the Thrombophlebitis, and I was left to sort out the mess Charring Cross hospital created on my own. The fact that I was being treated as an outpatient because my main hospital was Ealing hospital left neither hospital wanting responsibility for my care. The excuses coming from my BC nurse to avoid aftercare in my eye were inexcusable because all I wanted was advice from someone who knew what to do nothing more. I was not given a leaflet or explanation the only people willing to advise me were at The Maggie Centre and they wanted me to see a Physiotherapist. 

Other Comments

Was there anything particularly good about your NHS cancer care?

No, not really I have found patient care and clarity at both hospitals to be terrible. The excuses by my team have left me feeling neglected. To me communication is so important, but when your notes go missing or the individual you are seeing has zero knowledge of your history at hand it falls on the management to why.

Was there anything that could have been improved?

As you have read there are a number of improvements that clearly need implementing.

Any other comments?

My treatment was done between two hospitals Ealing and Charring Cross. Treatment took place in 2009 and a recurrence developed in 2012 of same cancer. Thankfully with the help of the internet I have knowledge of how to manage the problems I have faced, but still it should not fall on a patient to resolve a medical issue, but qualified medical staffs. 

To be perfectly honest my whole experience past and present has left its mark. That is why I have requested a referral to the Royal Marsden hospital. The full extent of the issues I have faced and misuse of words when explaining avoidable issues by staffs has resulted in me requesting this referral. For a BC nurse to say I should complain to PAL because another patient who could not speak English had also received bad treatment, and they were using the language barrier as the reason to why mistakes were made leaves doubt. Not only that but for this BC nurse to say put it in a complaint to help this other patient because I was English and they had to listen to me is a sad and bad position to be placed in.

From the very beginning of my treatment and hearing the words, but we don’t have control over our nursing staffs my high alert button was switched on. You cannot treat a patient in this day and age and expect them to remain silent if they are unhappy, but so many still do. The health/rights of a patient should never be compromised, under-estimated or neglected.

........................................

So people fill out these forms and speak out if there is an issue. It may seem like a waste of pen ink, but staying quiet will not correct the issues within the NHS. I think we will be seeing more of these forms to help correct the mess the NHS is in. Five minutes of your time is worthwhile in trying to improve NHS patient care. I know I sure the hell have had my rant and I know I could of said more in the comments section, but I think the question section says it all.
My criticisms of my treatment are not dismantling the NHS dream, but make sure what has happened to me cannot be repeated. The Nightingales in the NHS need our support to get things back on track and make long over due improvements.

2 comments:

  1. It is definitely well worth completing these forms so thank you for doing it; many people don't bother. In the London Cancer area of NE and N Central London these forms are reviewed and discussions are held about the things that are consistently causing problems. I assume that they will be for your area too. Nothing will improve if we don't speak out in an official way about the problems.

    Great stuff, Sarah!

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  2. True Eliza,

    It is no good moaning to friends and family because they cannot do anything. It is better to be pro-active about health care and log down any issues you might have. The surveys are done anonymously and it gives you a chance to highlight the improvements they need to make. The form itself was a tick list of replies but I thought nope I'm gonna add some additional info. Some may feel this is going overboard from what they requested, but I wanted Mark Davies Chief Executive of the Imperial College Healthcare NHS trust to know my reasons behind the replies.

    Sarah M xx

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