My Name & Address
With held on this copy
For my website
Secretary of State for Health
Department of Health
Richmond House
79 Whitehall
London SW1A 2NS
xxth January 2010
Dear Secretary of State for Health
Please find attached a copy of a document I recently sent to the Chief Executive of the NHS hospital where my recent successful APER was carried out (Abdomino Perineal Excision of Rectum) leaving me with a permanent colostomy due to cancer. However this letter is not to highlight various mall practices that I have experienced first hand within this NHS hospital. More so the inconsistencies & lack of voluntary information & support that is not available across the whole of the NHS, in one single place.
My overall wish is for someone to address the whole NHS system. Thereby hopefully improving & standardizing the service that all NHS cancer patients receive & deserve rather than being dependant on which hospital they visit and the internet. Apologies mean very little to me at this stage and action needs to be taken now & not later from someone who has the power to make positive changes. These inadequacies on information, communication and support are lacking right across the NHS, and not just from the hospital I attended. So my experience is nothing but uncommon and dreadful. The only thing that surprised me, and indeed extremely grateful for, was the speed at which I was fast tracked through the system once diagnosed.
My suggestion is for a comprehensive patient information pack that would aid patient welfare & expectations giving them the reassurance & information they & their families need immediately after being diagnosed. The pack is roughly outlined in my attached letter to the NHS hospital in which I stayed. Initially this pack is for patients with my condition and treatment. However could these patient packs also be extended to cover other major ailments? I am sure smaller ailments are all ready covered with various information sheets but are probably not standard in any way throughout the NHS.
I am sure these packs of information would create valuable time for the overstretch NHS staff as they would not have to re iterate simple instructions & advice on similar patients or worse still omit telling them some vital piece of information that could of aided their frustrating & painful recovery. Overall the patient would be better well informed & reassured therefore wasting less time discussing small concerns about their condition. This would then allow all NHS staff to concentrate & spend more time on patients who really need hands on help so improving the quality of care.
To coincide with these packs prevention is always better than a cure. Surely therefore the way to accomplish this would be by educating the population on symptoms and start an earlier cancer screening program. Together with promoting an extensive healthier life style via the media & warning people of typical symptoms. The current media does not cover anywhere near enough and needs to be improved.
I appreciate the bewildering task ahead in producing these information packs; however I believe other countries governments have already taken steps in this direction. Please note this is not down to charitable organizations to produce them. Such as the Macmillan trust or individual hospitals who are struggling with balancing budgets. However the way forward is by a collaborated attempt between the NHS governing body and its underlying structure. Not forgetting to incorporate invaluable information from other dedicated charitable trusts & specialist hospitals. Not just necessarily from the United Kingdom.
It would be some reassurance & consolation to my self & others in similar situations if you could confirm what improvements or actions you could commit too in producing these single source, comprehensive patient packs on a national scale. As I am led to believe the care and information available varies immensely from individual hospital, staffing experience and resources. I believe this may be confirmed by a recent 2009 MacMillan report and other staff within the colostomy association.
As you can see from the attached letter it has consumed a vast amount of my important convalescing time. However it is now time to leave it in the hands of someone who can make these ideas become reality & improve the NHS. Ultimately allowing me to regain lost time, to try & start putting my life back together with my family & hopefully living to an old age.
Thanking you for your time
Yours Faithfully
Mr Ian
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PLEASE FIND ATTACHED LETTER BELOW
Mr I,
,
,
,
.
Mr M Millar,
Chief Executive,
Hinchingbrooke Health Care NHS Trust,
Hinchingbrooke Hospital,
Hinchingbrooke Park,
Huntingdon,
Cambs, PE29 6NT
xxth January 2010
Dear Mr M Millar
I am aware that Hinchingbrooke hospital has Six potential partners identified to operate Hinchingbrooke hospital in the near future ( ref 8th January 2010 http://www.strategicprojectseoe.co.uk/) So I appreciate there could be a lot of changes ahead for the hospital itself. However after my poor initial recent cancer experience I am not just highlighting one particular department or system failure. This will no doubt need many considerations taking into account. Therefore I would like this letter to be processed from your self downwards and not simply to go via the complaints procedure as it’s not a letter of complaint.
With my observations & some experiences that I have encountered first hand this may enable you to make some positive changes within this Hospital, while hopefully taking into account some of my suggestions. Yes I realise you are limited on finance and resources as most hospitals are in this difficult financial time. I am also aware of the charts and strategic plans held on various notice boards within the hospital addressing areas for improvement.
However I would have preferred my initial experience to have started with Prior knowledge, as this is a very powerful thing when entering into the unknown but it can make the difference between a faster hopeful recovery or a longer more stressful confusing journey.
The ultimate goals which may or may not be apparent after reading this vast letter are two fold
a) The distinct lack of voluntary forthcoming information & support from a single source immediately after been diagnosed with cancer. (suggested solution within this letter ref patient information packs)
b) To give you an insight into some events that I encountered first hand whilst being treated in Hinchingbrooke & needs bringing to your attention for you to determine if you could improve other parts of the hospital.
INTRODUCTION TO MY EXPERIENCE & PATIENT INFORMATION PACK
I have just been recently discharged from Hinchingbrooke hospital (Bay xxx xxx Ward xx Dec - xx Dec 2009) after been diagnosed with rectal cancer and had what I am led to believe a successful APER carried out (Abdomino Perineal Excision of Rectum) leaving me with a permanent colostomy. (DUKES x STAGE) It has been rather a whirlwind of events that have unfolded and I have had to make some life changing decisions with a minimal amount of information which has not been easy for myself or the family. However the trauma & anxiety could have been lessened considerably if the correct measures, support counselling, forth coming communication, information & practices had been in place from the very start. I feel very let down by the system and no matter how many apologies come from what level; this will never make up for the unnecessary sour experience. I am usually a level headed person who makes decisions on a daily basis due to my xxxxxxx role that I undertake as a profession. However due to the nature of my condition it was something I was well ill prepared for and had no prior knowledge, so was reliant on information & communication that I was hoping to gain from the professionals with an abundance of voluntary information, re assurance and support. Unfortunately this is not the case so far. After been told I had cancer I felt like a new child entering school for the very first time and did not know how I should feel apart from frightened? How on earth do you expect someone to know anything about what is normal never mind what questions to ask & to whom? I was expecting to be taught from very the first day with an abundance of information from a single source. However this should not be in a verbal format due to facts, figures and information do not register clearly when you are told you have cancer. It can take some time for information to sink in and verbal information can become confusing or just a non event.
Yes we know everyone is different and they need varying support when they are diagnosed with cancer. Some need all the information possible while others just say get on with it. Unfortunately for me on the xxth xxx 2009, the 1st thing that I did was to go into shock and disbelief. Even up until this point I believed I was simply coming back to hospital to have some more tests carried out. This was due to the lack of information given to me on my appointment letter as quoted on a letter dated xx/xx/2009.”Dear Mr. xxxx. An Appointment has been arranged for you to attend one of the team in Mr. A clinic.” If I knew that I was going to be told I had cancer I would have at least brought my wife for support.
On this appointment letter there should of been another statement of fact "to discuss results of recent tests, please bring a friend for support" or something similar
Yes unfortunately for me I later found out that some of the support I should of received was not forth coming from the MDT (Multi Disciplinary Team) due to the two very important people who could of possibly made this VERY 1st traumatic time of finding out a little less painful . The two team members had also been off sick and it was their 1st day back for one of them. As far as I was concerned this was a managerial mistake, and as such there should have been measures in place to help anyone in this same situation and should have been up to full speed with my condition ready to counsel me. I do not know to date if this is part of the job description on the MDT to counsel patients but I was briefly given very harsh facts with very little compassion and the only reassurance that I would have a colostomy for the rest of my life. Yes apologies have been received but my world fell apart from this day onwards and I honestly don’t know how I continued. I was speechless and so was everyone else, it seemed like ages before anyone spoke within the room. All I seem to remember was been briefly given two options. “A= cut the whole lot out, but it means I would be with a colostomy for the rest of my life with an assured 95% success or they just remove the cancer with a 64% success in the hope that it would not spread to anywhere else”. I also got the impression from this brief exchange of words that the decision had already been made for me, that I was simply going to have a Full APER. I was then told to go and sit with the colorectal nurse specialist who could answer any questions. At this point I had no questions that would have made me feel any better and all I wanted to do was die. From what I remember there was very little exchange of words except information to do with the operation & what a colostomy is. However at this point I would have liked reassuring that it is not necessarily the end of the world as I felt. I needed counselling and written information as this would have helped me tremendously, but I felt it was not there for me at this turning point in my life. I was still in disbelief and shock & could not even begin to get my thoughts together to try and think of any questions. It was not until a few days later that I found some information from the internet and other Ostomy patients that helped a little in answering some of my accumulating questions, emotions & feelings.
My main concern here was that I needed information that I could have taken way with me on this day that could have answered many questions. I actually came home on the 1st day with very little information or reassurance even if it had been mentioned at some point. I just had a head full of confusion & despair and the fact I was to have colostomy for the rest of my life. This grief is not necessary & could of been lessened, no matter who has to tell a patient "they have cancer" regardless of the staffing levels. As having first hand experience in this nightmare of a situation I believe I should have been presented with a wealth of information. This information I believe should of been in the form of a comprehensive pack that I or any patient could of taken away with them that answers many questions and re assures them.
When it was too late I found these websites & PDF files below within a relative short period of time that answered some of my many questions & gave me some reassurance. However there is just too much information and can be overwhelming & incomplete. Although using these as a starting point a lot of the information could be collated into just one comprehensive patient information pack. However these single sites are not definitive and as more searches are carried out, the more pieces of information come to light.
http://www.colostomyassociation.org.uk/
http://www.cancer-fund.org/colorectal/html/eng/pdf/Bowel_Cancer_Booklet_Eng.pdf
http://www.allaboutbowelsurgery.com/shared/stoma_care/before_surgery/
http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_Can_colon_and_rectum_cancer_be_found_early.asp?rnav=cri