District Nursing Teams Who Won't Deal with PICC Lines / IVs

[InfoForMum]

Some information for anyone in Norfolk or anyone elsewhere who does not have access to district nurses who will deal with PICC lines, Hickman lines or other chemotherapy related care at home.

In summary our local district nursing team does not provide IV line care whereas another team up the road does. I got no joy from the team or hospital so contacted our local MP. The upshot. A trial is now being launched for a subset of patients to have IV line insertion and line care at home. History is in my main thread here - http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=1168#p9557

This may not immediately benefit Mum, but AS LONG AS PEOPLE LIKE US KEEP THE PRESSURE ON IT CAN HELP. This will minimise hospital stays, minimise travel and reduce infection risks for those with IVs, so the economic case is there.

IF YOU DO LIVE IN NORFOLK PLEASE ADD YOUR VOICE TO THE CAMPAIGN BY EMAILLING YOUR MP TO MAKE SURE THIS IV CARE AT HOME TRIAL PROGRESSES TO BECOME A STANDARD COMMUNITY NURSING OFFERING.

Please contact the support nurses if you want more details and if you find yourself in a similar situation I want to encourage you to send a letter or an email. Our MP's response was swift and his action was positive and pro-active. Find the contact details for your local MPs here http://findyourmp.parliament.uk/

I will scan and forward the letters recieved both from Mr George Freeman MP and the local community nursing commissioner. Please feel free to ask the support staff for a copy. My mother has given her permission to share these.

Regards

Sarah

THE LETTER SENT TO OUR MP:

From: Sarah

Sent: 20 September 2013

To: 'george.freeman.mp@parliament.uk'

Subject: Shockingly Inadequate Cancer Care for Your Constituents

Mr Freeman,

I am writing to you on behalf of my mother who lives in your constituency. She recently received a diagnosis of pancreatic cancer. Her regional specialist centre for this cancer is 60 miles away, so she will have 2 x 4hrs round trips every 2 weeks for the next 3 to 4 months to receive chemo and attend clinics and suffer from being distanced from her primary care providers if she has complications that need hospitalisation locally . She has struggled to accept that, especially as local hospitals in other areas have accepted training to deal with this regime and have fitted it into their services with support from the further flung specialist centres.

That's one significant challenge faced by most patients in largely rural catchment areas for PC specialist centres and needs to be addressed, but I recognise that may take significant time. The immediate issue, that should be dealt with urgently is that she comes home with chemo drugs in a pump to finish each course of treatment and there are NO district nurses willing to come out to either disconnect the pump or do essential care for her central line between each 2 week treatment. Instead she is expected to make the 25 odd mile round trip to the local hospital 48 hours after chemo to get the pump detatched and go again a week later to have her central line flushed.

15 miles up the road, a couple with EXACTLY the same diagnosis and treatment have district nurses who are trained and able to help. When I asked the local hospital what could be done they said “we are more than happy to train district nurses to do this and it is very simple to do, but we cannot force them to be trained if they are not willing to get that training or do not feel comfortable doing these procedures”.

My Mum is likely to progressively weaken during treatment, so this issue will only become more urgent over time and I have no idea how many other people might be affected by this specific issue or similar ones. I do know that there is at least one other district nursing team serving Norwich who have also opted out of providing this care (another patient we know with the same diagnosis and treatment). So that means that 2 out of the 3 people we know of are being let down.

Having approached both our local GP and the local hospital, neither of which can influence or change this situation, I am coming to you.

I understand resource issues. I understand there are costs associated with training and maintaining expertise, but neither, in this situation could be perceived as prohibitive. In some areas in the UK hospitals or district nurses would train me as a family member to do this for my mother. I would love to be able to do this for my mother, but there are many less able elderly carers who would not be able to help and in an ironic twist my request to be trained was refused because neither the local hospital nor our regional specialist centre will train people without a nursing background to handle chemotherapy equipment. So a double whammy on the postcode lottery.

So again, I understand resource issues and I understand training costs. What I don’t understand are healthcare professionals who would “really rather not” help someone going through what my mum has to go through. She would “really rather not” have cancer and would “really rather not” have to drag herself round the county to grab the slim chance that she can buy a few months more of life while the treatment makes her very weak and ill.

I do hope you can help look into this and perhaps take up this issue with the appropriate ministerial team. I am sure this is not the only quick, simple, but immensely important supportive nursing treatment that individual district nursing teams can simply opt out of providing, or the local trust allows them to drop. This seems to be begging for some oversight and standardisation across the region.

I trust you’ll forgive this being emotive, but I seem to be fighting tooth and nail, every day for basic, co-ordinated, decent treatment for my mother at a time when she as the patient and me as the carer have the least resources to do so. Like I said, I feel desperate for less forthright, able carers and patients. I am an expert in my own field and am currently directing all of my not inconsiderable skills at getting the right care for my Mum. This should not have to be the case.

Regards

Sarah

[Bee]

Well done Sarah,

We were talking about this the other day, and counting our blessings as we live in an area where either DN swill visit or relatives are happily taught, line care etc. good for you let's hope everyone can get an equitable service

Bee x

[karen17]

Well done Sarah - I will also support that. How is mum doing and how are my fellow health visitors Bee and Nicki plus the lovely June and Cathy? I know Julia and Kate are enjoying a well deserved break. Also been thinking about Hilary?

Virtual hugs to all you lovely ladies

Karen xxx

[Cathy]

That reminds me to chase my MP for a reply to my letter (re funding). The DN thing must feel so frustrating when there is even stuff on Youtube about how to do this.

Karen - I am well thank you but how are you?? Did you go up to Yorkshire (or maybe you are even there at the moment)?

Jonathan is still struggling with weeing and pooing and stomach pains (oh dear - I sound like I'm 5!). We saw the Onc earlier this week who gave him an examination looked at his recent scan and very recent blood results. The blood results were v good - within the "normal" range. Her view is is that the culprit is his prostate (enlarged) and he has now had more blood tests and an ultrasound scan and we see the Onc again a week on Monday. Jonathan was very boosted (as was I) to think it may all be unrelated to the disease and resolvable - she seemed to think it was most likely to be unrelated. Anyhow, we have everything crossed for the appt.

I think Julia and Kate are back today from their travels? I had a message recently from June on Facebook to say Bill wasn't so well - his scan result didn't bring good news (which they had been forewarned was likely).

Hilary might be in Crete at the moment with her family? I discovered that where her and Dave have been going for years is the next village along to where Jonathan and I go. Such a small world - we may have eaten next to each other in a taverna!

Loads of love and have a lovely weekend everyone

Cathy xxxx

[J_T]

Great stuff Sarah. Words fail me that your local DNs are so resistant to being trained for this simple procedure. Most professional people want the most up to date training so they can do the very best job that they can. Norfolk should be ashamed at their "really rather not" attitude. I bet you're bloody livid, I would be!

Julia x