"out patient consultation at crosshouse regarding colorectal problem"

About: Crosshouse Hospital / General Surgery

(as the patient),

It has taken me 4 weeks to recover from the mental trauma of my consultation with the surgeon. The reason for my visit was to discuss any possible options which could help my extremely distressing incontinence problems, without resorting to having a stoma.

Just wanted to discuss a couple of possibilities which were on the bladder and bowel foundation website and also on the NHS choices website. However the surgeon told me that he had never even heard of these websites and he certainly doesn’t read websites....he only reads medical journals and he had never heard of the 2 treatment options I had hoped he would discuss. He said if they were of any significance he would know about them.

I cannot understand why these treatments are on these sites and yet the surgeon totally dismissed them in a very arrogant manner.

I have no doubt that this surgeon is extremely skilled but his lack of empathy did him no credit and caused me a great deal of trauma

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Responses

Response from Fiona McQueen, Nurse Director, Nurse Directorate, NHS Ayrshire and Arran

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Dear Hopedashed, I was so sorry to read your posting about the lack of compassionate care you experienced at your consultation with us.

We expect all our staff to listen to their patients and be empathetic to their needs. I assume you came to the consultation anxious, but also hopeful that we could work with you to improve your health; and we have obviously undermined your confidence in our service.

If you want to contact Eunice Goodwin, our Patient Opinion Coordinator on 01563 826222 and give us some details we can try and help in any way we can. With best wishes for your future care and treatment.

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Update posted by hopedashed (the patient)

Thank you Fiona for your reply.

As you correctly assume I went to this consultation with great anxiety but also great hope. I have an extremely compassionate and supportive GP and I suppose I was expecting the same understanding from an expert at the hospital. Yes I was anxious but I doubt that anyone with anal incontinence will not be.

On the day of my appointment the clinic was eventually running 90 minutes late... a very physically challenging situation for an incontinence patient. However the receptionist and nursing staff were very helpful in updating us as to when we would be called, thereby allowing me time to leave the clinic waiting room several times.

My only aim in posting this experience is to try to make sure no-one else has to have their hopes dashed in the way mine were. Maybe I was clutching at straws but since the surgical options were on 2 recognised patient websites I thought they were worth discussing.

Maybe in the near future I will feel able to contact Eunice. It took me a while to feel able to write about my experience, so not too sure about speaking about it yet to a stranger. I have confided in 2 family members and 1 friend and I always end up in tears. I haven't even felt able to share this with my GP yet, but I know he will respond in an encouraging way.

Yours sincerely,

Hopedashed...but regaining my positivity through faith

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

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Dear Hopedashed,

I am too am very sorry your experience was so traumatic and distressing. I have encountered arrogant people too and it is not a nice way to be treated. I can only imagine how you must have felt as a patient and it is neither acceptable nor helpful behaviour.

I have spoken with Fiona and she would very much like you to contact me with some details, which will be kept in strict confidence. If you feel able to email me and give me your name, address, date of birth and date of your clinic attendance, we can look into this further. (email - eunice.goodwin@aapct.scot.nhs.uk). I understand that you may feel you can’t call me and that is ok, but here is my number in case you do wish to contact me - 01563 826222.

Thank you for sharing this with us, we really would like to prevent this happening to anyone again. On the plus side, I am really glad that you were kept well informed at the clinic despite the delays and that it was so beneficial to you. This will be a very useful reminder to us that all that by keeping people informed it can have a much bigger impact than we may ever know. I will certainly pass this on to the outpatient clinic staff.

Kind regards,

Eunice

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Update posted by hopedashed (the patient)

Thank you so much Eunice for your suggestion that I get in touch with you by email....as I said earlier I get a bit emotional when I talk about this experience so will definitely give you the details you have asked for by email.

I am not good at receiving sympathy and my purpose is only to try to improve this experience for future patients.

I certainly endorse complimenting the clinic staff. They certainly didn't seem to mind my coming and going from the waiting area....I just said I needed to sit in a cooler environment and would return in time according to the 3 delays they announced.

Yours sincerely,

Hopedashed...but finding this website very therapeutic

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

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Hi Hopedashed,

I am so glad you did get in touch with me by email, thank you. This is an opportunity to look into your experience. I agree it is important to improve things for future patients and without your details it makes it much more difficult.

I also wonder if you would like to consider getting a second opinion, I can explore this for you if you would like me to. You can let me know by either the PO site or by my email, whichever suits you best. I am very glad you are finding the website very therapeutic.

Kind regards

Eunice

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Update posted by hopedashed (the patient)

Thanks again Eunice for suggesting the way forward.

Yes I would like a second opinion but as yet do not wish to pursue the option of having a stoma to solve my problem. Hopefully you can suggest someone in Ayrshire and Arran who would be willing to meet me and talk over my concerns about my future treatment concerning incontinence. That person should ideally not feel professionally threatened by a patient like me who has tried to do as much research into my condition as patient websites allow and as a result would like to know the pros and cons of other intermediate procedures.

As I said to the Consultant, "This is my body and my future quality of life we're talking about".

So for me this is a decision where I must consider all options before choosing the right treatment and all I would like is to discuss them with someone who understands them infinitely better than I do.... and not just be told "never heard of that procedure".

Thanks again Eunice...you are restoring my hope.

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

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Hi,

It is so true that it is your body and your treatment should be your decision, which should be assisted by the experts and their expert advice. As you know, we have had a long conversation and we are in the process of arranging a meeting with you, Andrew Moore (Assistant Director of Nursing) and me.

I have also requested our librarian to do a search for the evidence regarding the treatments that you had been looking to discuss, which may be helpful. In addition, as you are aware, we are endeavouring to arrange the expert conversation that you need. I am very glad you have found the discussions and the use of PO so helpful.

Best wishes,

Eunice

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Update posted by hopedashed (the patient)

Eunice...you are working so hard to resolve my problem and it is much appreciated.

I am glad that we have now arranged a meeting tomorrow with Andrew Moore and yourself. I look forward to hearing what the librarian has discovered about the 7 alternatives to a colostomy, especially since the NHS Choices website clearly states that " usually a colostomy is only recommended if other surgical treatments are unsuccessful "

I was offered one of these alternatives ( sacral nerve stimulation ) by a neighbouring health board, at the suggestion of my local Consultant, several years ago but I did not pursue that after a consultation with that other surgeon, as I was not able to undergo a reasonably major surgery at that time as I am the carer for my elderly father. This is one of the reasons I am trying to find an alternative less major treatment to a colostomy.

Just seems a shame that my Consultant has never heard of the other alternatives. I did ask him if he would now research these "for his professional curiosity" but his answer to that was " if they were of any significance I would know about them "

So thank you for doing what the Consultant was unwilling to do.

However as I did say to you in our last phone conversation Eunice, " maybe the Consultant was having a difficult morning. "

Hopedashed ...but because of this website now feel more like...Hopeful

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

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Dear (may I say?) Hopeful,

Thank you for your kind words and for taking the time to meet with Andrew and me. I think we had a good meeting and I am delighted you are more hopeful. As we discussed, we can only promise to explore the other options, which is what you wanted originally (absolutely understandably). I do hope there is another solution that suits you and your life circumstances better.

As you know, there is now an option for you to be referred to a Consultant in Glasgow. I have contacted them and await some information for you. I will let you know as soon as I have the details but it sounds encouraging from the aspect of the types of surgery he does.

As information is ‘out there’ and more patients arrive at our door with a wider range of knowledge, perhaps we need to enhance our skills at handling this challenge. A natural reaction for some is to be defensive, but that will not wash now with our increasing access to robust clinical evidence on the World Wide Web.

Kind regards

Eunice

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Update posted by hopedashed (the patient)

Hi again Eunice.

It was so good to meet with you and Andrew and hear your responses and suggestions for my future options. As you say it will be extremely useful for me to hear the expert view about all the surgical options that are available to me and to explore further any which are compatible with my particular medical problems and personal circumstances. Already you have managed to make enquiries to another Consultant and also to arrange an appointment with a specialist incontinence nurse who will be able to help me manage my condition in the immediate future.

A very positive outcome already....so even if it turns out that there is no other suitable option except a future colostomy...you will know that you have helped me to make the informed choice which suits me. This is not about who is right and who is wrong....the Consultant or me....it is all about my right to make an informed choice. You very kindly asked your librarian to research the appropriate information and I have tried to slowly absorb the data on the amazing amount of information which you gave me to read at my leisure. However as I said before much of the knowledge needs to be interpreted to me by an expert as it is obviously not written in terms easily understood by an enquiring patient.

You are absolutely right when you say that some members of the medical profession need to keep more up-to-date with the information that we patients can access...perhaps then my consultation would have been much more helpful rather than dismissing me as another patient trying to be a google expert.

Hopeful....but very realistic

Update posted by hopedashed (the patient)

Dear Eunice,

I really want to thank you and Andrew for all the help I am receiving from you...however I have decided to take my patient opinion further and intend to now lodge a formal complaint about my treatment by this Consultant Surgeon.

My reason for now wishing to make a formal complaint is that, although I myself have received help by using this Patient Opinion website, I do not think the Consultant involved has been asked officially to review the way I was treated at that disastrous consultation I feel.

I feel the only way others will benefit from my experience is if I formally complain.

Will let you know if this official complaint results in a change for the better.

Hopedashed

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran We are preparing to make a change

picture of Eunice Goodwin

Dear Hopedashed,

You are most welcome and while I am glad we could help, I am only sorry we did not manage to address all the issues fully. You shared the reasons off line for pursuing this and I understand your need for full satisfaction. I am in the process of reviewing how and with whom I share the stories in Ayrshire and Arran and a plan is evolving. It is my hope that it will help for stories such as yours.

I am glad we got you an appointment for a continence assessment and I hope this is helpful. I believe referral to this service may not be as frequent as perhaps it can be and I wonder if this is an area of development and learning for us. I have heard some great things from people about how this was of help to them and I really hope it will be for you too.

Please let me know if you decide to take up an appointment with the consultant in Glasgow and we can get that moving.

I will also pass this to senior management to review.

It has been a pleasure working with you (I feel I should be adding you to my Christmas card list now) and please do keep us updated. If I can be of any further help, please do not hesitate to call, you have my number.

Wishing you every success with the next stages of the journey,

Best wishes,

Eunice

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Update posted by hopedashed (the patient)

Hi again Eunice,

You are so right that referral to the continence team should be a priority in the treatment agenda for those of us who suffer from incontinence..

Really cannot understand why it has taken 6 years for me to be referred....AND it was you who organised this for me. So if I had never discovered the Patient Opinion Website, I would still not even know that such a team of specialist continence advisers existed.

Had an assessment at the clinic recently and immediately I was given very practical help to manage and perhaps even eliminate my symptoms. The Continence Nurse Practitioner certainly knew about some of the options that I had hoped to discuss with the Consultant AND she was able to offer me one of the solutions I had hoped to try.

The Nurse Practitioner has offered me the use of a personal anal irrigation system which can be used in the privacy of my own home to hopefully allow me to have accident free days. She is getting some of the equipment sent to me and she is personally bringing me the rest..what a wonderful service. She also said that some Consultants in Ayrshire and Arran do refer patients to them but obviously not the Consultant that I had the misfortune to see.

Will let you know soon how this treatment works for me and will also update you when I get a reply to my official complaint to Ayrshire and Arran.

Thanks again for referring me to the Continence Practitioner.

Hopedashed...but now so so hopeful.

PS....don't think I will need to see the Consultant in Glasgow now....so that will be a saving for the NHS.

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran We are preparing to make a change

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Hi Hopedashed (but now so so hopeful),

I am sorry it took so long to get this help but I am delighted this looks as if it may be of help to your situation. It will be a good reminder to us all that the simpler options are often worth exploring.

I will highlight the continence team referrals (or lack of) to the appropriate people. It is now clear that if some work is done to promote this service then others may benefit from it too. This has been identified as a result of your posts. Thank you again,

Best wishes

Eunice

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Update posted by hopedashed (the patient)

Hi Eunice,

Merry Christmas to you all at Patient Opinion website.

Great progress to report. Have been using the irrigation system, prescribed by the specialist continence team, for 2 weeks now and it works so so wonderfully. It is easy to use and the results have been perfect...absolutely continent again after 6 years of very frequent passive incontinence...at long last I have my quality of life back.

So glad I did not agree to a colostomy. I am convinced that this is the right option for me and could also be an option for others suffering from passive anal incontinence.

I definitely believe that this treatment option should have been offered to me at first. I would have thought in these days of financial restraints on the NHS all surgeons should be knowledgeable about other...dare I say...cheaper option ...Obviously for me that was not my first concern...my first concern was to have my medical problem solved without resorting to radical surgery and this has now happened thanks to your help.

Nothing to report yet about my formal complaint to Ayrshire and Arran. They are still investigating...even though this is day 27 ie working days after I made the complaint. They have told me that I am now entitled to refer this to the Ombudsman because they have not met the 20 day target for complaints. Will update you when I eventually hear more.

Many, many thanks,

Hopedashed 2014 but 2015 beckons brightly thanks to Patient Opinion Website

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

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Dear Hopedashed (but very hopeful now)

A very Merry Christmas to you too and thank you so much for my lovely Christmas card. I could not be happier for you, I am delighted this has been so successful for you and I hope this is the long-term solution. I have requested that the pathway for patients with continence issues is reviewed and referral to a specialist nurse in continence advice is embedded in the pathway appropriately.

.

Thank you so much for sharing your story, it highlights the power of listening to the patients and the public. Not only have you highlighted this very important issue, saved NHS Ayrshire and Arran a considerable sum of money, but I believe you made us a twitter sensation too.

All the best for 2015,

Eunice

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Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

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Dear Hopedashed,

I believe that you decided to stop pursuing your complaint, so I just wanted to pop in a wee post.

As you know, I am delighted you continue to be completely continent and I know you are too. I spoke with the surgeon from your story this evening and he too is ‘very, very happy with the outcome and he is delighted for you’. He went on to congratulate the success of the treatment.

I wish you all the very best in your freedom and enjoy those swimming activities you talked about.

Warmest wishes,

Eunice

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Update posted by hopedashed (the patient)

Dear Eunice....after many months I now feel able to conclude my story.

As you said in your last online post, I decided to drop my official complaint against the surgeon. The ONLY reason I did this was because I had a complete mental breakdown and could not cope any longer waiting for the result of my complaint. It has taken me 5 months to recover from the breakdown which was 100% caused by the abysmal way I was treated almost a year ago now.

However I am still able to report that the Qufora Anal Irrigation Kit which the Continence Nurse introduced to me is a complete success....I am not long back from a holiday during which I was in the hot tub every day....a pleasure that had been impossible for me for the last 6 years...so ....despite being told that my only option was a colostomy....I now have my quality of life back without any surgical intervention at all.

You reported that you had updated the Surgeon about the successful treatment I had been given and you said he was delighted. I therefore hope that he never again tells any other patient who is referred to him with passive anal incontinence that their only hope is a colostomy, but instead remembers that I have had my problem solved without it.

I conclude by saying that I have had many instances of ill health in my life, beginning with a 6 month stay in hospital at the age of 9 in 1959 and have had many visits to Consultants ever since including Heart Specialists, Rheumatologists, an Oncologist and a Gynaecologist and I have always been treated impeccably and with compassion. So the fact that I felt I needed to complain about my treatment at the Colorectal Clinic was an extremely radical decision for me.

So Eunice I really cannot express adequately how much you helped me by pursuing my options and solving my extremely distressing problem.

A huge thank you to you and all at Patient Opinion...you truly have given me back my life.

Hopedashed....who became Hopeful...and am now Hoperestored

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

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Dear Hoperestored,

I am sorry you have suffered so much as a result of the long process you went through and I am glad you are well now. It can be very easy to underestimate how things can impact on us.

On a great note though, I am truly delighted that you have been on holiday and the Qufora Anal Irrigation Kit has been such a success. I also hope the weather was great, I assume it wasn’t too bad because you managed to be in the hot tub every day, but you never know!!

I am sure the Surgeon reflected on your experience and I hope they managed to incorporate continence assessments as a part of their routine practice where appropriate. Having a colostomy was clearly not the only solution to your problem.

At the risk of offending some, not only was it better for you and your quality of life but it was sooooooooooo much cheaper too. I was staggered by the ball park saving made your alternative treatment, so much so that I recalculated it several times to be sure. It would be an even greater success story if other people too have benefitted from the same thing – NO colostomy and a simple irrigation process.

I am sorry you did feel the need to complain about your treatment at the Colorectal Clinic and all that went with it but I am so pleased we reached a great outcome. Not only that, I think we may hold the record for the PO post that has had the most responses back and forward (this will make 20!) and I got 2 lovely cards from you, thank you again.

In your own words, ‘I really cannot express adequately’ how much of a pleasure it has been to be part of the process that has helped you so much.

I wish you all the very best for the future,

Take care,

Eunice

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