"My Cancer treatment journey - the good and not so good"

Thank you to whoever thought of this site and giving people a safe way to express their experiences.  The following is a summary of what I see as the good and not so good aspects of my cancer treatment journey at Aberdeen Royal Infirmary from 2016 to 2018.

THE GOOD:

1. Access - Obviously having access to NHS services, skilled people and the treatments that when added up would cost a small fortune and without them I would no doubt be dead now or well on the way to it!

2. Oncology nurse -Not sure if ARI assigns a specific Breast Care Nurse for people going through breast cancer treatment but it felt like I adopted an Oncology clinic nurse for this role.  This nurse always tried her best to make herself available, answer queries, offer practical and emotional support amongst other things. This one stop/continuity of contact was very much appreciated.

3. The medical oncologist – He was patient, understanding, approachable and made himself available for extra meetings to discuss matters if necessary.  An absolute gem.

4. The one stop clinic/ clinic E– For the initial appointment. Good to have these so that you can have most of the tests in one go.  The bonus would be if you could have a core biopsy at these clinics as well.

5. The chemo helpline – helpful staff and very efficient.

6. Anchor services - the support that they offer on the chemo ward, including things like access to Podiatry service (for chemo damaged feet) especially when you may not have the funds to access private services.  What a smashing bunch of volunteers and staff.

7. Regular nurses on the Chemo Ward – good to see people you have seen before and who were helpful and approachable most of the time.

8. Being treated with dignity and respect– this did not happen all the time but good examples are the nurse and doctor who conducted the core biopsy in a very person-centred way, staff at Clinic E and D and most of the nurses and the majority of ancillary staff on the Plastic Surgery Ward were excellent.

9. Empathetic and non dismissive staff –  those staff (but not all)  who recognised that ailments and side effects may seem relatively minor on their own, but who were aware of how the build up with one more thing on top of the other and how that could be hard to deal with physically and mentally.

10. The patient food – well it may not be high end but I thought it was absolutely fine, nutritious and plentiful. My goodness - one certainly did not go hungry.

THE NOT SO GOOD/TRY AND IMPROVE:

1. Confusing information/misinformation – be more accurate and careful about how you give and present information.  If staff do not know things then it is better that they do not pretend that they do. For example, being initially told that it is not definite that you have cancer yet and then being given information at the same time that states that you have been given this information because you have cancer. Staff saying that chemo and other treatments will not affect things like lung function when they did and such side effects are well documented.  Timelines for treatment and surgery being given which were nonsense and caused a great deal of stress. Contradictory information being given about the cancer’s characteristics. Not being fully informed about treatment options right at the beginning and being given misleading information.

2. Referral to ARI staff from Chemo helpline - no problem with the chemo helpline.  They transferred calls to general ARI medical staff who I found were no help at all.  Also please tell your staff it is not their place to inform people that they can not have an ambulance.  It may indeed be the case that they can not call an ambulance for someone but that is not the same thing.  This caused confusion on two occasions especially as I was very unwell, confused and in pain on both occasions.  I feel I might have got more assistance if I had been found drunk on the streets.

3. Nursing care – for example, please ensure your nurses know how to deal with all aspects of chemo administration, When I informed a nurse on the chemo ward that I had pain and discomfort at the cannula site during administration, they gave me a warm wheatgrass pillow and told me to put it on top of the cannula.  I ended up with yet another permanent scar to add to my cancer scar collection as well as having a painful arm for over a year.  Another nurse told me at a later treatment that if the pain is at the cannula site this indicates leakage; that if pain is further up the arm then this indicates that the veins may need warming with, eg, a wheatgrass pillow or similar.  If there is indication of leakage then the infusion should be stopped. 

In my opinion, I had a poor experience of nursing care with one particular nurse on the Plastic Ward – eg. they did not answer the buzzer when I believe they knew assistance with personal care was needed, couldn’t help with surgical stockings because they were physically unable to do so. did not know whether a dressing was needed, failed to provide clean dressing, failed to provide oral thrush treatment until eating became a problem, failed to organise discharge causing extra expense and stress.  

4. ARI Protocols – see people as individuals. For example, do not give them unnecessary drugs that may cause them suffering all because someone has decided it should be the case at the ARI, whether they really need them or not.  I also had a treatment unnecessarily with held/delayed based on medical staff misunderstanding a protocol it would seem.

5. One stop clinic/clinic E – it would be ideal if core biopsy could be done at the clinic as well.  However, that being said, these clinics I assume are primarily designed to cater more for non-cancer patients.  I was at the clinic for over 6 hours in total.  I left the clinic feeling physically ill not just because of the stressful  possibility of cancer but because of having to wait around and not daring to leave for a break in case I missed being called for results.  This could have been managed a lot better.  For example, let patients know they may have a couple of hours wait and suggest they have a break and get a meal etc.

6. Lack of contingency planning – Lack of being able to adapt treatment plans within given timescales.  Try and be more flexible and hence reduce the stress for people.  Cancer is stressful enough thanks.

7. Lack of confidentiality – some staff seem oblivious to this.  For example, I have heard staff discussing patient treatment in detail  within earshot of other patients (e.g. Dept. of Nuclear Medicine Waiting Room, Chemo ward 310, Radiotherapy Dept).  By the way, maybe nurses are trained to project their voices but it really is not necessary all the time.  If they were also  to come a bit closer to you, eg. In ward 310, then maybe everyone does not have to hear your details etc.

8. Medical staff arrogance/Lack of dignity and respect – Please remind all your staff about this.  For example, at radiotherapy planning meeting after laying semi naked on the table, I noticed two men through the window in the adjacent room.  I recognised one as a doctor.  However, they were not a necessary part of that meeting. It just seemed a bit pervy to me, for want of a better word.
Another example, in the Plastic Surgery clinic, a doctor thought they had the right to enter my cubicle without permission or warning to discuss someone else’s treatment.  No they did not.  Again, it felt slightly pervy.  I don’t care  if they were a doctor.  Both this doctor and the one at my final ultrasound need arrogance management in my opinion.  At first just the nurse and the doctor, next minute another three people come in to watch without warning and on the doctor’s word.  I totally objected and requested they leave as they were not necessary.  I eventually forced an apology from the doctor who agreed they should have asked first. I also hope that the Plastics Treatment Clinic has now been rehoused into an area that respects patients confidentiality, dignity and respect.  Curtained cubicles so close to each other really belong to a past age now surely.

We often hear about how improving NHS services requires additional funds. But it is not always about money being injected into services as the above would indicate.  Thank you.