Cancer Nurse Specialist and Thoracic Nurse Specialist

[SunshineAhead]

Hi all - I'm not sure if everybody likehere in Bristol (the Bristol Royal Infirmary to be exact) having already had curative resection of LLL lobectomy I, and all patients in a similar position attending the same hospital, are lucky to have access to both the above grade of nurses. The CSN is I think pretty much the same as in every specialist hospital but what I think may differ from some is that we also have the TSN who work with the Thoracic Surgeons (not cardio thoracic ). Once you have been to see the Respiratory Consultant you are introduced to the CNS. If the multi disciplinary team decision is then for you to have surgery with curative intent you are then introduced to the TNS with the surgeon.

Once you have met both disciplines of nurses you can contact either of them to discuss anything regarding your ongoing symptoms and future treatment. I cannot praise both teams highly enough here in Bristol. I have to say though, and I hope it may help other going forward, rather than leaving voicemails for these hard working people, I have an agreement with mine that I will email them as I find it easier to set out exactly what I want to say without distraction or going off the beaten track. If I have an urgent concern I will mark it urgent and they have without fail come back to me every single time usually the same day, and at the latest within 24 hours. Between them they have helped expedite my operation day by making sure I was put on the cancellation list and chasing for a date, and also ensured my referral for chemo was sped up. The problem I have found is not the doctors or nurses that slow these referrals down but once it leaves their desks and is referred to the admin teams that's when it then goes wrong.

If you have concerns relating to delays for tests or treatment it's definitely worthwhile emailing your concerns to these amazing people (in my case they are all ladies). It does seem it's easier for them to deal with Departments and Teams in one go with queries from different patients and this is easier if your concerns are in writing. Also, it is an opportunity for them to act as your voice at the multi disciplinary team meetings because we as patients are not privy to these, but at least one of your nurses will be.

If I had one complaint, and it is not against the nurses themselves, it is that they are only available 9-5 Monday to Friday. I really do think it would be so beneficial to patients if they had an after hours availability for late evenings and weekends, on a shift basis like most other nurses. Whilst I think the nurses on here are amazing as well as the Macmillan nurses, personally, i find it difficult to be totally open, frank and discuss fully my own problems with people I don't know and have no relationship with. I find it easier to discuss my personal situation with somebody who knows me, or about me at least, and not a stranger no matter how amazing they may be. That's just me.

[Babydolltina]

SunshineAhead, sorry but they are not Ladies, they are ANGELS! (just haven't got their wings yet) my wife has Small Cell Lung Cancer and she is sadly Palliative. The 4 nurses in charge at the Q.E. Birmingham (lung spec nurses) are total Angels. They do everything we need. The local hospice Nurse is the Lead Angel.

God Bless

[Elt79]

My specialist nurse always gets back to me as soon as she is able - I use both email and phone message. They are very busy but cannot praise them enough particularly at diagnosis and organising referral appointments. I am pretty much ok with treatment schedule now but she still checks on me regularly to see that am ok and that my daughters are coping.

[JanetteR57]

This sounds a fantastic service so pleased for you. I never knew about CNS at all - I had ULL in Dec 2010, diagnosed Jan 2011 and after 3 months went back to work, swimming etc but less than 6 months after my surgery lost a very dear friend suddenly to LC with widespread mets and started looking at patient forums online. Was shocked at how little research was being done at that time into lung cancer so decided to increase my swimming to raise funds for Roy Castle lung charity. In oct 2012 was invited to their conference in Birmingham as a fundraiser where I revealed that I was also a patient and attended a workshop on 'feelings' where I met for the first time other lung cancer patients and carers and a psychologist who facilitated the meeting. this was the first time I heard other 'journeys' and found mine was completely different (and not in a good way) and most people mentioned CNSs. When I had my next check up with my respiratory physician I asked if my Trust had any CNS so he introduced me to 2 of them! I've not seen them clinically at all and now being involved in lung cancer research am regularly surprised by the national lung cancer audit and national cancer patient experience survey that both evidence that access to cancer nurse specialists is very variable across the country. Everyone should be able to access one in my view. long may your great service continue

[SunshineAhead]

Thank you to everybody for your replies. I am corrected! Yes they are angels! Even though you know they regularly deal with many patients I am always made to feel special and that's a gift!

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

So pleased that you have had a positive experience with your LCNS. Unfortunately in some areas there is a shortage of specialist nurses. The recommended standard is having one full time lung cancer nurse per 80 new patients. There is however evidence in the literature that only 19% of trusts in England achieved this goal.The result is, that in some areas, there is an increased workload for some nurse specialists which may have a knock on effect on the quality of care they can give to each individual patient.

Kind regards,

All the team at the Roy Castle Helpline