Click on polls and you can suggest a poll. There are many topics that we could investigate that may aid the development of CLL care and support.
We are looking for suggestions that if we put it in a poll, we can actually do something with the result to make a difference!
Your suggestions matter, what experiences may you wish to share or investigate?
From my experience and listening to many others, it would be a poll asking about the experience people had with the delivery of the CLL diagnosis. Was it sensitively delivered? Was support information available (wasn't in my case), should there be a uniformly delivered information pack (UK) to assist people at the point of diagnosis?
We've heard some pretty shocking examples of people finding out accidentally by a locum doctor, being told whilst they were alone and unprepared and even confidence betrayal in hopefully exceptional cases.
The diagnosis can be so traumatic, I'd love to see it handled more sensitively and linked with support information (such as sites like this). Not everyone is IT literate so phone links and advice agencies would need to be included. I ended up scouring the net looking for support after diagnosis as I felt utterly alone and I'd hate to see future people being left in that position. Is this the kind of poll you had in mind?
Newdawn
Newdawn this does sound very interesting and you have got me thinking back to my own diagnosis and the way I received it. I am sure everyone's experience will be different. It would be very interesting to develop a way for us to be able to share our experiences.
The polling facility allows for two types of poll to be used. A multiple choice allowing any boxes to be ticked or a single answer question tick answer. Main question up to 200 characters. This does allow for short questionnaires/polls to be used here that could run in sequence or be posted as a chain accessible from the margin on the polls page. We could consider also creating a paper version of a suitable poll for those without internet access.
would you be able to provide the kind of questions you have in mind via the suggest a poll page.
keep them coming
Thanks
Nick
Agree totally with Newdawn.
I am sure in the 2008 guidelines it sets out what info should be given at diagnosis and details of a key support worker etc. Perhaps we could develop a poll around Newdawns suggestions and the guidleines? I will have a read through the guidlelines and get back to you later.
Jo
Newdawn
What you describe is EXACTLY what the Leukemia and Lymphoma Society does in he US and to a lesser extent Canada.
Each patient here is provided with phone numbers to talk to a REAL councillor and there is a wide circle of patient mentors, monthly meetings on local level etc. Their printed literature is highly accurate and updated annually. Available as a printed book and PDF. It has been reviewed by Dr. John Byrd of OSU, a world leading CLL expert.
Further, my small community hospital has a oncology social worker on staff and all patients at diagnosis and before treatment, have an hour consultation...
The sitution may be differnt in the UK, but he resources are there, if people would only use them...which they don't much.
50% of CLL patients are diagnosed at age 72 or older ...few are internet savvy... their support must come from the doctors and clinics family and friends ... it is a real problem.
~chris
The 2008 CLL Treatments Guidelines offers no such recommendations. Quality of Life isn't on the radar, unfortunately...it is up to the local doctor and from my experience most are focused on cancer killing alone.
Here are the guidelines
bloodjournal.hematologylibr...
Might look at the CLL Q of L survey the Mayo ran a few years ago...waste of time because it changed nothing, but some of the results were interesting... Chaya initiated this project and it was funded by CLL patients in part...she has written extensively about it.
CLL4 quality of life survey in Europe
CLL CANADA cllcanada.ca
Apologies, yes it wasn't the 2008 Guidelines, I have put the link below to the article I had read it in. At least this one did have some reference to patient support........although certainly out of date now!
bcshguidelines.com/document...
Thanks for your info.
Jo
I was only 42 when I received my diagnosis and was given a two/three page leaflet by the heamotologist , but other than that , nothing. The diagnosis itself was given in a fairly offhand manner and I was basically told to go away and not worry about it!, this attitude has continued throughout. I received nothing from my GP and there is nothing available at my GP surgery that I have seen. When asked, I am told to ask the consultant at the hospital. In my individual case, quaLITY of life issues have not been raised by any of my professionals, although I am hoping this will change w hen treatment becomes imminent in the early part of next year
Hi, I've been reflecting on the points made particularly the excellent guidance which Chris describes as being available in the US and to a lesser degree, Canada by the Leukaemia and Lymphoma Society.
Regrettably, the experience dinkywoman had doesn't seem all that unusual.
Chris mentions that the team has an oncology social worker attached to offer support, guidance and advice presumably soon after diagnosis. In my previous life, I managed social work services at a huge University hospital and it occurred to me that whilst social workers are attached to oncology teams, their involvement was only ever enlisted at the treatment stage when care planning/discharge arrangements were ongoing.
Which is why many CLL patients 'fall through the net' because they don't always follow the traditional route into services of other cancer patients. The W & W period can render them invisible at the very point support may be needed. It's clear that many medics (not all) don't recognise the emotional impact at the point of diagnosis. It's clear that this is the very point information and support network information is essential. It amazes me that if I was to have a tooth extraction or an endoscopy, I'd routinely receive a plethora of information from the Heath Service on what was to happen, who to contact, how to complain and even which bus to catch to the hospital. But following a diagnosis of cancer, I left without a single piece of information.
I believe this is an essential area to be worked on as every person I've ever 'spoken' to remembers the point of their CLL as a defining moment in their lives.
Newdawn
Thank you all for your input, links and submissions I found the NICE article very revealing, I agree this is an area that we could explore to help make a difference.
The section below from joloon’s post of the link: nice.org.uk/nicemedia/pdf/N... to NICE guidelines , within page 32 onwards. Did catch my eye, as well as devolved nations and individual regions having different policies does this explain why there is so much variation in the speed or level of implementation of NICE guidelines in this area,?
Section E. Resource implications
“Additional resources may be necessary for the provision of high quality information and educational material for patients and carers, and to allow staff time and facilities for talking with patients and carers. Resources will be required for training, both for clinical nurse specialists and to improve the communication skills of other health professionals, including senior medical staff. The main costs of improving patient-centred care in line with these recommendations will be for training and employing more clinical nurse specialists. It is estimated that about four new posts will be required per typical cancer network serving 1.5 million people – altogether, around 140 additional clinical nurse specialists for England and Wales, at an estimated total cost of £4.6 million (see Appendix 1,Economic implications of the guidance).”
Am I correct in understanding that the chronic disorders have not been identified as requiring different guidelines or different implementation of the haematological guidelines? In practise are more aggressive or treatment required leukaemia cases given priority? Therefor have guidelines been implemented differently than they were meant to be. Is this why people on W&W are falling through the cracks and not given the level of support identified as important for all?. Because there just are not the resources or funds available for the necessary developments required to allow implementation of the guidelines and recommendations for all haematological cancers? Therefor the Incurable, invisible and inconclusive fall below the radar aided by lack of awareness about the consequences for those having been diagnosed with it? herg.org.uk/publications/20...
Mikey47 has suggested we post the question/poll:
“Were you given a named contact/nurse and told who your care team were on diagnosis?”
Although the poll facility has limited capability we can ask a question (200 characters) with eight answers as multiple choice or single answer option.
Should we design a poll that gives the opportunity for members to identify the level of care/support that was on offer at W&W diagnosis and other stages in their journey? Have you any ideas how we could expand this question within the poll facility’s limited capability to add more range to answers and options?
Unfortunately it does appear guidelines are being implemented at different rates and in different ways with differences between devolved nations and individual regions and individual clinical facilities. Is there is a post code lottery and difference of what care/support you may be offered at diagnosis subject to your location or is there a more widespread issue? It would be interesting to find out more. ..How widespread is variation? How many are falling through the cracks and what effect does this have on the patient and carer?
Any thoughts?
Nick
This News I did find uplifting and wonder what other regions may follow. Perhaps if I write to Helen she can provide a little more insight from a nurse’s point of view and experience. Some of us may have met Helen at the Midland conference or are under her care. She is determined to give her patients what they need. The article below is from the Summer Newsletter.
Here at the CLLSA we were recently contacted by a CLL Specialist Nurse. This is the first time we have heard of a Specialist Nurse role created exclusively for CLL patients. Helen kindly agreed to write a piece on her role for our newsletter. We would all like to wish her well in her new role and hope that we may start to see CLL Specialist Nurses in other regions.
*******************************
On June 25th I embarked on an exciting new role as the Chronic Lymphocytic Leukaemia Clinical Nurse Specialist at Nottingham University Hospitals.
This is a brand new role initially funded for two years, but I hope I can prove it is a much needed role which will benefit a large group of patients.
I have worked within the Clinical Haematology Unit at Nottingham for the past 11 years on both the general haematology ward and the Transplant Unit.
My aim is to be a first point of contact who is easily accessible for the large group of patients in the Nottingham area, to be a source of information, offering advice and support.
I hope to improve the service provided and act as an advocate for those living with CLL. I hope that I can make a positive difference to their journey from initial diagnosis onwards, helping people make informed choices if and when treatment is needed. Due to a greater understanding of CLL more trials and treatment options are being made available to a wider group of patients.
This is the first Nurse Specialist role specifically for people with CLL, and hopefully the first of more to follow.
Dinkywoman
I can relate to your experiences of diagnosis and post diagnosis treatment by the NHS only too well.
I went to Haematology alone, having registered a higher than normal WCC, and without any forewarning that it might be anything other than an easily treatable blood disorder.
The person that I saw (a GP that dabbles in Haematology) was offhand and dismissive. She might just as easily have been telling me that I had an ingrowing toenail. She pushed a leaflet across the desk to me, saying "That will answer any questions that you may have" and didn't go as far as saying "Next, please", but her manner implied that I had taken up enough of her time already.
I wandered out of the hospital in a daze, but at least had the presence of mind to realise that it would not be a good idea to drive. Eventually, I made my way home and told my wife the glad news.
Subsequent visits have varied, depending on who I see.
A younger consulatant took over when the last one retired and he is a lot more approachable, but I still have to drag every little bit of information out of whoever I see.
My GP hasn't a clue, and I feel that there is no one out there that has the time or patience to give me the answers that I need.
Like bootneck, I went to Haematology alone, having registered a higher than normal white blood count (which went back over eight years). I saw a consultant haematologist who took the time to explain the illness, examined me very carefully and outlined the future possibilities. I was not surprised as I had done my research before the appointment. My GP has not come up against CLL and was planning to read up on it over Christmas and see me again in the new year when he will also have the report from the haematologist. Really can't complain about what I have experienced so far but am thinking that I will probably ask my doctor to refer me to a CLL specialist.
Anyone know if CLL 10 trial (FCR v Ibrutinib+R) is open for recruitment anywhere in UK?
Consultant recommendations 
Extending HealthUnlocked on Patient Power
Can anyone recommend a CLL expert MD preferably in North Central WI or nearby
