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Care Opinion

Arthritis Care

Posted By Tully

"Arthritis Care"

About: Ayrshire Central Hospital / Rheumatology

(as the patient),

I have attended the clinic for years now and between appointments at this clinic I saw my Arthritis Nurse.

I was diagnosed with Pulmonary Fibrosis and was immediately taken off Methotrexate injections. I have not had any alternative medication other than Sulfasalazine which I have been taking alongside Methotrexate anyway.

I had contacted my Nurse because my left knee was very painful and I wanted their help with my problem. I left a message for them but they did not get back to me. I called again a few days later and left a message with one of their colleagues as they were on holiday and would return the following Tuesday. They did not contact me. I brought this to the attention of the doctor when I saw them and they said they would speak to the nurse.

I again addressed the issue six months later at the clinic but this time it was with my doctor's colleague. I asked him why I had not had any contact from the nurse and why interim appointments with the nurse had ceased. They did not answer that question but said that even though the nurse had not contacted me this should not deter me from contacting them if I need support. Why would I want to contact someone for support when I feel that I have been abandoned and ignored?

I would like to know why I have had no further appointments or support from my Arthritis Nurse. What do I do now for support? To top that it seems that my usual 6 monthly appointments have become 9 months, it makes me think that complaining about my care is not as important as a member of their team.

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Responses

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran 6 years ago
Eunice Goodwin
Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team,
NHS Ayrshire and Arran

I respond initially to most of the posts and ensure they are passed to the appropriate team whether they are compliments, observations or grumbles. It is important to make sure all issues are addressed and I try to encourage that to happen for all the posts as required.

Submitted on 31/10/2017 at 08:43
Published on Care Opinion at 10:43

picture of Eunice Goodwin

Dear Tully,

I am so sorry this must be both very frustrating and very annoying for you. I would like to reassure you that we do take all feedback seriously and I am sorry you have not been given the answers you deserve. I don't know the answer to this but I can find out for you if you would like to contact me on 01563 826222 or by email on Eunice.goodwin@aapct.scot.nhs.uk.

Best wishes,

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 6 years ago
Eunice Goodwin
Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team,
NHS Ayrshire and Arran

I respond initially to most of the posts and ensure they are passed to the appropriate team whether they are compliments, observations or grumbles. It is important to make sure all issues are addressed and I try to encourage that to happen for all the posts as required.

Submitted on 31/10/2017 at 15:07
Published on Care Opinion at 16:39

picture of Eunice Goodwin

Dear Tully,

Thank you for contacting me off-line. As we discussed, I will explore the issues and get back to you as soon as I can.

Best wishes,

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

I respond initially to most of the posts and ensure they are passed to the appropriate team whether they are compliments, observations or grumbles. It is important to make sure all issues are addressed and I try to encourage that to happen for all the posts as required.

Submitted on 31/10/2017 at 16:47
Published on Care Opinion on 01/11/2017 at 09:07

picture of Eunice Goodwin

Dear Tully,

We discussed a few things that I said I would explore. Here are the answers I have for you.

The specialist nurses – we can’t establish why you did not get a call back. What we think may have happened is this

Due to the volume of messages left for the help-line, the nurses’ call back but if they don’t get an answer they only call back once more. Part of the problem may be that they call back from a phone that has an 0800 number and if you are like me, you possibly don’t answer it. Also, when you try to call it back, it won’t take messages. As a result of this, the Nurses are going to explore phoning back from another number so that this will not be a problem. I will post here if this does take off. Your Specialist Nurse will call you tomorrow and he can discuss what is next regarding your knee and anything else you may require. The service is now geared towards the patients being able to contact the service for support when the need arises, as opposed to set follow-up appointments. Regarding the appointment being 9 months instead of 6, this is most likely purely to do with demand. If you wait until February and feel you do need an appointment around the 6 months, call in and ask for a short-notice appointment or cancellation. This is always a win:win situation if we get a cancellation and someone can fill it.

As you know we have discussed this and I am pleased that you are happy with this,

Take care,

Eunice

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Update posted by Tully (the patient)

Hi Eunice, thank you for all your help and support. I received a call from The specialist nurse this morning, they explained the position from their point of view regarding returning calls. They stated firstly that they contacted me in March and I wasn’t available. I told them that wasn’t correct as they were on holiday. They then told me that they called me 5 days later but I wasn’t available, it is possible that they did call and I was out. However they stated exactly what you said about the nurses only give 2 call backs and if there is no response then they wait for the patient to call them again.

I fully understand this system but pose the question, why was there only one callback made to me? Going by what they stated to me this morning, they only tried once to call me back. The reasons I don’t see them was also explained in a different way, which poses yet another question, if my Arthritis Consultants both knew the reasons behind me not seeing the Arthritis Nurse then why did they not relay the reasons to me when I made the initial query regarding contact and appointments with the Arthritis nurse? Although contact has been made now, it still seems that the situation and the way I feel regarding my Arthritis care could have been avoided if the people involved had taken time to give me an explanation.

Also if there are rules regarding contact with the nurses then the patients should be made aware that if they are contacted twice from them and the patient is not available, then it is up to the patient to contact them again. How will the patients know in the first place that they have missed two calls, unless the caller leaves a message for them, which did not happen in my case. It will be a never ending circle if patients are never there to receive calls and need to call again and again and again. As I said, A Never Ending Circle and unhappy patients.

Thank you again for your help.

Tully.

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran 6 years ago
Eunice Goodwin
Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team,
NHS Ayrshire and Arran

I respond initially to most of the posts and ensure they are passed to the appropriate team whether they are compliments, observations or grumbles. It is important to make sure all issues are addressed and I try to encourage that to happen for all the posts as required.

Submitted on 01/11/2017 at 17:27
Published on Care Opinion at 17:56

picture of Eunice Goodwin

Dear Tully,

Thank you again for this clarification, your nurse and I agree this has the potential for a never ending circle. I had a chat with your specialist nurse after they spoke to you and we discussed some options on that exact point. This will be raised with the team to explore a variety of different ways to handle the help-line calls.

Some of the things discussed were:

- to re-word the contact card that patients are given. this could highlight that only two follow-up calls will be made (from an 0800 number) and to persist in calling

- perhaps using another phone which does not show as an 0800 number, so people may be more likely to answer and it will receive returned calls

- there may be a possibility of applying a different approach to filtering calls from patients and professionals by using a clinical mail box for the professionals.

You have raised a very important issue and one I know will be discussed. It may not be resolved over-night. but the important thing is that it is now in the spotlight, thank you.

Again may I say I am sorry you were left without the information or support you were looking for but again, thank you for raising this. While there are lots of possibilities, I have been promised a call to let me know what is decided on. I will post any update here so watch this space.

take care,

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 6 years ago
We have made a change
Eunice Goodwin
Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team,
NHS Ayrshire and Arran

I respond initially to most of the posts and ensure they are passed to the appropriate team whether they are compliments, observations or grumbles. It is important to make sure all issues are addressed and I try to encourage that to happen for all the posts as required.

Submitted on 06/11/2017 at 08:52
Published on Care Opinion at 09:16

picture of Eunice Goodwin

Dear Tully,

Just a wee update for you. Listening to your comments, the specialist nurse changed the answer machine so the message now clearly states that patients will receive a call back in 2 working days if they have left a contact number and that the returning call will be from a 0800 number. We try twice on different occasions, thereafter, we await the patient calling us back. As you are probably aware, we only leave messages on answering machines if we have previously been given consent to protect patients'' confidentially.

We hope this will address the issues raised making it clearer for all patients/carers.

Best wishes,

Eunice

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