"Depressed and abandoned"

About: Crisis Mental Health / Urgent and Crisis Service Crisis Mental Health Urgent and Crisis Service S5 7JT Northern General Hospital / Respiratory medicine Northern General Hospital Respiratory medicine S5 7AU Yorkshire Ambulance Service NHS Trust / NHS 111 Yorkshire Ambulance Service NHS Trust NHS 111 Wakefield WF2 0XQ

Posted by Mixed up but mindful (as the patient), 2 months ago

I have been diagnosed with a life changing lung disease. I've been told that there's no cure for me. I was told to help me with my diagnosis I should start taking immunotherapy medication. When I went for my first consultation appointment feeling very anxious and very confused on what was happening to me, I was reassured by the ILD nurses what was going to happen. We had a long chat about everything , and how to take my medication and that I would have a phone call every month to check in on how I'm doing. I also was told that if I'm unsure about anything I could phone the ILD nurses up at anytime and I would have to leave a message and one of the nurses would phone me back.
I did phone up to ask about something that I was unsure about. One of the nurses rang me back the next day and reassured me that everything was ok. Talking to her helped and I thought that I'm going to be cared for if I have any issues. I wasn't sure about what side effects would be like from the medication I was given, and the ILD nurses didn't explain either on what to expect . Even though I feel absolutely robbed of my life with having this life changing diagnosis, what causes me to have a lot of anxiety, knowing that I had the ILD nurses to phone up to talk to really helped.
I'm not a person who likes to bother anyone even if I have a problem. After a few weeks I was starting to feel unwell. I wasn't sure if it was the side effects from the medication I was taking or if I had aN illness. I phoned the ILD nurses up to tell them on how I was feeling thinking that they would phone me back to give me some advice. To my disappointment I didn't get a call back until a week later. The ILD nurse said to me that if I felt ill I should phone my GP not the ILD nurses. Blimey, I thought, what a change in attitude towards me.
It really upset me because I felt like I had done something wrong in phoning up for some advice on wanting to know if it was the side effects of the medication what was making me feel ill. I went to see my GP and they couldn't find anything wrong with me . They advised me to get in contact with the ILD nurses to see if it was the side effects what was making me feel ill. I was very reluctant to phone them back up but I wanted some advice. This time I didn't even have any ILD nurses phone me back.
Since this happened a good few months has gone by now. I haven't had any contact with the ILD nurses, not even the one call every month what was promised to me .
To say that I have a very serious health condition I've just felt left alone just to get on with it. I've been in and out of hospital a few times since with breathing problems. I feel that I can no longer phone up for any help if I need any advice.
I feel like I've just been given a lot of medication to take and just get on with it. I feel like my health problems are starting to get worse and I'm getting out of breath easily. With the lack of care from the ILD nurses I will no longer phone them up. My mental health has took a turn for the worse because it's been months since I was diagnosed with my lung disease and I haven't heard anything from anyone. I felt so depressed and abandoned by the ILD nurses that I felt that I needed to phone the mental health team up. At this point I felt like I was in a mental health crisis I and needed help .
The person who phoned me back from the 111 mental health service was absolutely amazing. I told her all about my diagnosis and how anxious and upset I was about everything. I started to apologise to her thinking that I was doing the wrong thing by asking for help. She listened to me and took me seriously what felt such a relief. She was very concerned about what I was telling her. She said that she will email and also phone the crisis mental health team up once we have finished our conversation. I couldn't thank her enough for taking me seriously and listening to me. I felt better after the call thinking I was going to receive a phone call from the crisis team.
What is up with the help services. I didn't get a call back from the mental health team and now I have experienced a massive meltdown and I'm not coping very well at all. That's why I've decided to write about my bad experiences with the ILD nurses and the mental health team.

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Responses

Lesley Butterworth

Head of Nursing and Patient Experience,

Yorkshire Ambulance Service NHS Trust

Submitted on 01/12/2025 at 09:57

Published on Care Opinion at 09:57

I am pleased to hear of the positive impact you had from the 111 service. From your story I think that your call will have been taken directly by one of the providers of the 111 option 2 service. These providers are different depending on where you live, however if you would like help to find out which organisation took your call so that your comments can be passed on to the person who took your call, we may be able to help please contact us on;
Patient Relations
Yorkshire Ambulance Service
Springhill
Brindley Way
Wakefield 41 Business Park
Wakefield
WF2 0XQ
Tel: 0333 130 0549
Email: yas.patientrelations@nhs.net

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Zoe Dodd

Head of engagement, experience and peer support, Engagement and Experience,

Sheffield Health Partnership University NHS Foundation Trust

Submitted on 09/12/2025 at 11:14

Published on Care Opinion at 11:14

Good morning,
Firstly apologies for the delay in response. I am pleased to hear that the 111 element of the call was helpful this is a service that is overseen by Sheffield Health Partnership for the option 2 in this area. We have made the providers aware of the positive feedback.
I am however concerned to hear that you did not have a call back from the crisis out of hours service which was promised to you. I have liaised with the service manager about this feedback you have left. If you would be happy for us to look into this further please contact either myself zoe.dodd@sheffieldpartntership.nhs.uk or the service manager for crisis services claire.revitt@sheffieldpartnership.nhs.uk.
I am also sorry to hear that you are not coping well at the moment and this has had an impact on you. If you do feel able to get in touch we can discuss if there is any current support that might be helpful either from ourselves or wider partners.
Take Care and thank you for taking the time to leave this feedback,
Zoe

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Update posted by Mixed up but mindful (the patient) last month

Hello, and thank you for replying to my letter I posted. The person who took my phone call from 111 op 2 phone me from Doncaster. She was absolutely amazing thank you.
I haven't phoned the mental health team up for a long long time, so I phoned the Sheffield out of hours like I have done before. I was in such a serious mental health state that I left a few messages to the team, Ive never used the 111 op 2 service before and was unsure who to call. Obviously I will do in the future if I need the mental health service. When I got a call back the lady said that the out of hours mental health team have got incontact with her to phone me. She said that she was from the 111 op 2 service. Like I've said the lady was amazing, but its very bad that the crisis team didn't bother to call me back.

Zoe Dodd

Head of engagement, experience and peer support, Engagement and Experience,

Sheffield Health Partnership University NHS Foundation Trust

Submitted on 15/12/2025 at 17:06

Published on Care Opinion at 17:06

Thank you for your response and taking the time again. I think one area where we are trying to make improvements is wider communication that people know to contact 111 option 2, at the beginning we acknowledge that people were not always clear on this.
If you do want me to look at your specific experience please let me know but this has also been shared with the OOH service manager. It is positive to hear that the 111 operator you spoke to was so helpful and will ensure that is shared.
Kind Regards,
Zoe

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Update posted by Mixed up but mindful (the patient) last month

Thank you for your response and saying that you would look into this matter.
I'm really not in a good mental place to carry this on. Im trying to use my coping strategies at the moment to get by. I'm really struggling, but if I need to I will get incontact with the 111 op 2 service.

Sheffield Teaching Hospitals NHS Foundation Trust

Submitted on 22/12/2025 at 14:56

Published on Care Opinion at 14:58

Thank you for sharing your feedback about your recent experiences of care. We are truly sorry to hear about the challenges you’ve faced in managing both ILD and your mental health. We understand that being diagnosed with a chronic condition like ILD can feel overwhelming, raise many questions, and cause significant anxiety.
We are very sorry that you feel let down by the service and did not receive the support you expected from the ILD Nursing team. We appreciate how this may have left you feeling anxious and alone at a time when you were worried about your health.
To clarify, the ILD Telephone Advice Line is managed by the ILD Clinical Nurse Specialist (CNS) team and is intended to provide advice and answer questions specifically related to ILD, such as guidance on medications prescribed as part of ILD treatment. It is not an emergency service and does not replace routine community management of your condition. We are sorry that this was not made clear and will ensure that patients are given accurate information about the purpose of the Advice Line going forward.
If you become unwell, your GP should be your first point of contact, as symptoms may not be related to ILD and they can arrange the most appropriate treatment or referrals. For urgent symptoms such as chest pain or severe breathlessness, the best immediate action is to call NHS 111, who will assess and direct you to the right care pathway. The ILD CNS team are planning to update the answerphone message on the advice line in the new year, to provide more clarity and signposting to support people to access the most appropriate support for their issue. This will help ensure that anyone phoning up to seek advice with symptoms indicative of more urgent care being required can know to access this immediately.
The Advice Line receives over 600 calls per month, and calls are prioritised based on clinical need. This can sometimes lead to delays in call-backs, and we apologise for any frustration this may have caused. The team is currently developing a business case to increase staffing and improve response times.
We also understand that breathlessness affects both physical and psychological wellbeing. The ILD Nursing team aims to provide routine follow-up appointments every three months, alongside consultant reviews and any necessary tests. We are sorry for any miscommunication regarding the frequency of these appointments and hope this explanation helps clarify what you can expect.
If you would like us to investigate your concerns further and provide a response specific to your experience, please contact our PALS team on 0114 271 2400 or email sth.pals@nhs.net. They will ask for some personal details so we can look into this for you.
Once again, we are very sorry for your experience and appreciate you taking the time to share your feedback. We wish you all the best with your ongoing care.

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