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Care Opinion

Follow-up care and information

Posted By CATINTHEHAT

"Follow-up care and information"

About: North Devon District Hospital / Cancer Services North Devon District Hospital / Haematology

(as the patient),

Whilst the subscribed chemo CHOP treatments given to me every three weeks were generally without problems, there were a couple of occasions where the appointment times were late to start.  I felt this was due to either lack of staff or chemicals not being delivered to the chemo suite on scheduled time. Neither of these incidents were particularly distressing to me.  

I was concerned that before my infusions every third week I only had a phone call with an unknown doctor (I spoke to my Consultant only twice during 18 weeks of treatment - they told me this was due to a shortage of haematology doctors at the hospital, and that they would prefer there to be more available).  I was questioned regarding side-effects, problems etc with the chemo to date - there were quite a few side-effects, some more worrying than others.  I wasn't always confident with some of the answers I was given.

My biggest worry of all has been that after treatment #6 and on leaving the chemo suite it was like, oh well, goodbye, lots of luck, hope we don't see you again.

I was expecting a run down on what to expect next, how I should expect to feel over next few weeks, what I'd be able to do, could I at last go back to some sort of normal living, i.e. being with family, going shopping, out to eat etc, etc.  I have tried to look this up on the internet, but haven't found any such information.  The most helpful person I have spoken with has been someone on the MacMillan site, who has had the same treatment as myself, lives in same county and is the in the same age bracket as me.  Because of the rarity of my cancer there seem to be few people having gone through the treatment, so not a lot of support out there.  The day after my treatment finished I received a letter from the appointments dept at the hospital advising I had follow-up appointment on November 2nd (three and a half months away).  I then received another letter advising that a Pet-scan would be organised for six weeks time and a further appointment 2 weeks after the scan to discuss findings - this was far more acceptable than the 3.5 month appointment, which did make me angry I must admit.

My experience throughout this journey was not as bad as I had expected in the beginning, however I do feel now that I have been "dumped" which is a shame.

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Responses

Response from Rhea Crighton, Lead Gynae Oncology Clinical Nurse Specialist (Northern Services), Cancer Services (Northern Services), Royal Devon University Healthcare NHS Foundation Trust 2 years ago
Rhea Crighton
Lead Gynae Oncology Clinical Nurse Specialist (Northern Services), Cancer Services (Northern Services),
Royal Devon University Healthcare NHS Foundation Trust

Submitted on 20/08/2021 at 20:53
Published on Care Opinion at 21:58

picture of Rhea Crighton

Dear CATINTHEHAT,

Thank you so much for your feedback, I really appreciate the time you have taken to let us know your concerns and experiences.

I am sorry that you didn’t feel you were provided with enough information or support to help with the transition between treatment and follow up, which as you said, can be a long time. I can only begin to imagine how anxious you must have felt to learn you would have to wait over 3 months for a follow up appointment but I am glad you have since been informed that you would be seen sooner and with your scan results.

I’m sorry your treatment was delayed at times and that your appointments were not with your consultant. We are currently reviewing our staffing which will hopefully reduce the risks of these issues happening in the future.

We are also in the process of setting up post-treatment information sessions, which unfortunately stopped due to COVID, and I hope this means other individuals won’t be left feeling how you were. I know this doesn’t change your experiences and if you would like to discuss your experiences further please do contact me via the Seamoor Unit on 01271 311579. Alternatively if you would like to discuss any concerns you have regarding ongoing symptoms please do contact your clinical nurse specialist who should be able to help.

best wishes

Rhea

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Response from Pippa White, Haematology CNS (Northern Services), Cancer Services (Northern Services), Royal Devon University Healthcare NHS Foundation Trust 2 years ago
Pippa White
Haematology CNS (Northern Services), Cancer Services (Northern Services),
Royal Devon University Healthcare NHS Foundation Trust

Submitted on 23/08/2021 at 10:52
Published on Care Opinion at 12:03

Dear CATINTHEHAT,

I am so sorry to hear that you have had a difficult time during and after your cancer treatment.

As one of the haematology nurses I would like to send my sincere apologies for this. Although I cannot comment on your experience in the Seamoor unit I would like to explain why you are not always reviewed by your consultant. Generally the consultant will review patients at the point where we have a diagnosis to explain to you results such as a scan and biopsy. They are then the core person in deciding what treatment you should be offered and whether we require any input from other teams. They will then arrange further follow up with another member of the team to review you prior to your chemotherapy unless there have been area of concern that may require a change in treatment or if things become more complex. The other doctors in the team will have discussed any concerns with your consultant so that they are kept in the loop on your care.

I am sorry to hear that you didn’t feel confident in the responses you had in regards to your worrying symptoms. This sounds like maybe our communication needs to be improved and if you happen to remember any of these times or have letters from these appointment it would be really useful to get some specific feedback if you felt happy to do this. If you didn’t feel happy to discuss this with the team then the Patient Advice and Liaison Service (PALS) could offer support you and communicate with us on your behalf.

I understand that when treatment comes to an end it is very daunting and being given a clinic appointment 3 and a half months later must have been worrying and like being left in a void.
I am glad to hear that you have received the appropriate follow up for clinic but would also like to offer you the opportunity to have a Health Needs Assessment, this would help to highlight your areas of concern now that you have finished your treatment and we could sign post you to other services that the cancer wellbeing service might offer. You can call the Haematology nurses and let us know you would like this referral completing and we will then get back to you.

We are also in the process of setting up “End of Treatment Clinics” where once treatment is complete we would discuss next steps and support if needed. If you felt comfortable I would really appreciate some feedback from you as to anything specific that we can add to this clinic regarding support and information.

We also previously had a support group that ran every other month prior to COVID and we hope to get this back up and running in the near future. Please let me know if this is something you would like to be added to the mailing list for.

Best wishes

Pippa

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Response from Pippa Clifton, Breast Oncology Clinical Nurse Specialist (Northern Services), Oncology (Northern Services), Royal Devon University Healthcare NHS Foundation Trust 2 years ago
Pippa Clifton
Breast Oncology Clinical Nurse Specialist (Northern Services), Oncology (Northern Services),
Royal Devon University Healthcare NHS Foundation Trust

Developing a service to deliver Outpatient Day treatments in settings closer to patients homes

Submitted on 23/08/2021 at 15:00
Published on Care Opinion at 16:03

picture of Pippa Clifton

Dear CATINTHEHEAT

I am sorry that you have found our services lacking at times. I apologise for the delays that you have experienced in receiving your Chemotherapy on time whilst in the Seamoor unit. I am sure you are aware that the making of Chemotherapy is a complex and time consuming process in the Aseptic Pharmacy Suite. This can lead to delays in the delivery and administration of the Chemotherapy in the Seamoor Unit. Sometimes the delays are because of the nurses workload or unforeseen events, which then has a knock on effect for all other patients for whom we are scheduled to look after that day. Whilst this in no way makes up for the stress and frustration that you may have experienced, I hope that it goes some way to explain why this happens. Some of the delays are unavoidable and unforeseeable, however we are always open to implementing changes to prevent avoidable changes wherever possible and we are working closely with the Pharmacy team to identify and prevent delays wherever possible.

If you have any more feedback I would be happy for you to contact me on 01271 311579 to discuss. We are always looking at how we can do better so your feedback is important to us

Kind Regards

Pippa Clifton

Seamoor unit manager

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