"Chelsea & Westminster Endocrinology: lack of communication causing delays"

About: Chelsea & Westminster Hospital / Endocrinology

(as the patient),

As some one with multiple diseases and associated conditions, who goes from pillar to post at several different hospitals, I am in a very good position to judge performance and offer comparisons.

After the usual battle with a useless NHS GP who I feel had has mismanaged a chronic disease for years, I finally got to see a specialist at this hospital who is highly regarded by others in my position. It took me years of research to identify them, and then years to fight for a referral.

In my experience, it is very difficult to see a named specialist anywhere - the system doesn't seem to understand that we want to see specialists we have checked out, not the ones who are less good as many of us have been misdiagnosed and mismanaged for years.

Anyhow, I was impressed with this specialist and they have finally recommended a course of action I support. They said I needed a DEXA bone scan, which I have also been fighting for. I was posted a form which looks like some sort of order form for the scan, but NO instructions on how to action the scan; not even a phone number. It's not clear whether the scan has been ordered and some one will write, or whether I need to do something.

The specialist has now written twice with references to me following up the scan. As I'm not psychic and still no instructions have been provided, I cannot do anything.

Months are ticking by, just wasted, while nothing happens. It is so frustrating - why not tell patients what to do with the form? There is absolutely NO information on it: do you want me to ring some one? do you want me to write some one? do you want me to take the form somewhere? It's a mystery -

I wrote to PALS weeks ago and asked for clarification on actioning the scan, but got no reply.

This will have a knock on effect because the scan now wont be done by the next time I see them, so things cannot be progressed.

And it all started so well.......

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Responses

Response from Sian Nelson, Membership and Engagement Manager, Chelsea and Westminster Hospital NHS Foundation Trust

Hello,

I am sorry to hear about the experience you have shared on Patient Opinion. It is difficult to identify your name on this forum, however an identical case did come to the PALS office last week and we resolved the issues with the help of the PALS Officer. If you feel PALS have not helped then please do call me direct but I may assume you are the same person and since you have posted this feedback your issues have been resolved.

Instructions on how to book a scan should always be sent to patients. It is unfortunate that it was not sent to you and we apologise for this.

If your issues have not been resolved, please do contact me at PALS so that I can organise instructions to be sent to you immediately and provide any assistance you may need.

PALS telephone no: 020 3315 6727

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Update posted by Waarheid (the patient)

Patients need to have the confidence to post here without being identified, so it is of concern that attempts are made to identify individuals when this site claims to keep information confidential.

My issue has NOT been resolved. I received no written response from PALS. When I rang to follow up, I received an inane verbal response: "you have been sent a letter with instructions". I have not received this letter. I asked what the instructions were and was told there were none, just a letter telling me to follow the instructions.

It is like being on an endless loop of futility.

Response from Amy Gaskin-Williams, Team member, Patient Opinion

picture of Amy Gaskin-Williams

Dear Waarheid,

Thanks for responding to share your concerns about confidentiality. As you say, we encourage anonymous feedback and so I'd like to just reassure you of our commitment to doing what we can to protect your anonymity.

I'm part of the Patient Opinion team and one of the people who read and moderate stories before they are published. There are a small number of people in our team responsible for moderating, each of whom takes patient's confidentiality very seriously.

The only information we hold which could identify you is your email address, and your post code. We never, ever, share this information with anyone outside Patient Opinion without your explicit consent, and we never will. The only information visible to the public and to the NHS organisation involved in your care is the username you chose, how your identified yourself (as the patient, carer, family member etc) and your story.

Sometimes though, we do hear of cases where staff read a story on Patient Opinion and due to the information contained within it, they may be able to match your experience to feedback which has been shared with their PALS team, service staff or complaints department. Sometimes, the assumption is wrong, and sometimes it is right. Of course, the more unusual the experience you describe, the bigger the chance someone will know about it and guess right. That may be what happened here.

I hope this reassures you - but do feel free to respond if you still have concerns about this.

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