"Why does this system leave a dying man in pain?"

About: Harmoni / NHS 111

(as a carer),

111 is a good thing in principal. I can see that as a memorable alternative to calling 999, it makes perfect sense – it’s nice and clear for people to remember. However, my experience of the service they provide is not good at all.

I am a carer for a man with end stage pancreatic cancer. He often needs very rapid pain relief. The way to get that relief is to call and get a nurse over to give him the medication. We were advised by the district nurses to either call 111 or to call Harmoni (on a 0203 number) so that they can send out a nurse to give him the injection he needs.

We have had continual problems with both 111 and Harmoni. We have been left waiting for over an hour and a half to get through to speak to someone. Eventually, we have to call 999, as he is in such agony and we just needed the mediation (ambulance staff are able to give him the injections too). Once, I got through to Harmoni, to find an answerphone messaging advising us that they are busy and we should call 999. That’s fine, but it doesn’t seem like a good alternative is being provided here!

When we do eventually get through to 111 – every time you have to go through his full case history, answer the same questions each time, and it takes ages. Surely there should be a better system in place, where they can find his records electronically and save the time. After all, we are sat there with him a agony and each question delays his relief – it’s so upsetting and frustrating. When you’re dealing with painful end stage terminal cancer, there must be a better way.

Oh, and twice they managed to send the doctor and then the district nurse to the wrong address! It’s the last thing you need when you’re desperate to relieve the suffering of a dying man.

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Response from Amanda Mayo, NHS 111 Service Director, Harmoni

I am very sorry to read of your experience with both NHS111 and also the Out of Hours Service.

In order for me to investigate the issues that you experienced, I would be very grateful if you could email harmoni111.feedback@nhs.net with your details, the details of the patient involved, the dates that you had contact with the service and your concerns as detailed above, I will personally look into all aspects of the situation and feedback to you.

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Response from Amanda Mayo, NHS 111 Service Director, Harmoni We are preparing to make a change

Dear Sir

Thank you so much for getting in touch with your comments about the NHS111 and Out of Hours Service and for taking the time to speak to me this afternoon. I am truly saddened to read about your friend’s delay in receiving suitable pain relief at a very difficult time.

I agree with you that the ideal is to have a system in place where NHS111/Harmoni have immediate access to your friend’s case history. This way, essential pain relief could be arranged much more quickly. I need to investigate what the issue was in the case of your friend, as Harmoni’s system does support immediate access, as you would expect for an out of hours provider.

We are in the process of introducing a new system called Co-ordinate My Care (CMC) across London. The aim of the CMC is to make sure the right people (for example healthcare staff) have fast access to a patient’s case notes at the end of their life. I note that your friend did have such a case record. NHS111 does have access to CMC and I need to investigate if the record was used when contact was made with NHS111 and the Out of Hours service. This investigation will ensure we are able to learn from errors made.

Whilst this will not change what happened to you and your friend, I sincerely hope you can be reassured that we are working to make sure your experience does not happen to others. Once again, thank you for sharing your story on Patient Opinion. It is through comments like yours that we can make sure services work better for everyone.

As discussed on the phone I will ensure the sequence of issues are fully investigated and that you receive a response that is full and detailed from responsible managers.

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Response from Katie Beach, Commissioning Manager, Richmond Clinical Commissioning Group

Dear sir,

I am a commissioner at Richmond Clinical Commissioning Group and have responsibility for the new NHS 111 service in the Richmond area.

While I understand that your friend may not be from the Richmond area, I wanted to respond to your story as patients in all areas may be having similar experiences.

As Amanda has said in her comment above, the Co-ordinate My Care register is being rolled out across London to help health professionals to access important information relating to an individual’s care and wishes. As commissioners for the 111 service, we are committed to improving the experience that patients and carers have when accessing this service. One of our main priorities is to make it as easy as possible for people in the circumstances you describe to access the help that they need. This may involve some streamlining of the way that Co-ordinate My Care and 111 work together.

I wanted to let you know that the feedback you have given is being taken into account by those working in the 111 service across London. While this does not change the experience you had, please be assured that your feedback will help us to make improvements to this important pathway.

Best wishes,

Katie Beach

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Response from Simon Mills, NHS 111 Clinical Lead, NHS Wandsworth CCG

Dear Sir

Thank you for your feedback regarding the NHS 111 and Out of Hours services. I am really sorry to hear of the difficulties you experienced in accessing timely care for your friend during a very difficult time. Your comments and concerns are extremely important to us, and raise a number of very important issues that we will need to investigate thoroughly. As my colleague Amanda has already mentioned, and Katie has echoed, there is a system in place known as ‘Coordinate my Care’ in London which enables important medical, nursing and social information regarding a patient’s end of life care to be shared between the health care professionals involved in a particular case, and your friend had such a care record in place. Despite this, it is apparent that you and your friend experienced delays in call handling, confusion regarding appropriate telephone numbers, and communication difficulties between organisations and healthcare professionals. It also needs to be clarified if the Coordinate my Care record that was in place for your friend was accessed and used appropriately.

Thank you for speaking with me at length on the telephone on Wednesday. I hope our conversation assured you of the steps that will be taken to learn from this case. An investigation has already begun to identify areas where processes were not in place, not robust, or not followed appropriately. A meeting of all relevant health care professionals will be taking place within the next few weeks to bring together those involved directly in your friend’s care, and those involved in the organisations delivering that care, to review the facts surrounding this case, to discuss learning, and to develop a clear action plan that will improve the care delivered to patients both with urgent and end of life care needs. These findings will be reported back to you, and I will take personal responsibility for doing this. Whilst this will sadly not change the experience that you and your friend encountered, it will take steps forward in reducing the likelihood of a similar incident for other patients in the future.

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