As a patient, whether it is on a private scheme basis or through the NHS, you have RIGHTS.
As you read my website, and in particular my diary, you will notice that my RIGHTS have been VIOLATED several times by Doctors and “health professionals”. At the time I was too ill to “fight my corner”. However I now realise that it is my RIGHT to have certain information, and be treated like a person not just a disease or case number in a hospital.
As someone recently said to me “why does my Doctor think he took out my brain when he removed my cancer tumour?”. How right that is. We do not have to be treated like idiots just because we ask questions about OUR body or OUR disease.
We have to come FIRST now, this is a life-threatening disease that we have. No one else will help us, it is down to us only. We have to make sure we are treated as people first with normal human feelings and reactions. It is one of the most terrible things to happen in anyone’s lifetime, and yes, most probably it will kill a lot of us, but before we die we have our RIGHTS. I for one, am now going to get the answers I want. I am going to help others find out what they need (and have already done so with my website and making friends with so many of you).
If the Doctors have a bad day, or just want to get through a busy clinic, it should NOT be us that suffers from that whiplash tongue with a sharp comment. As patients, it only takes one wrong word from a Doctor or health professional to make us feel ANGRY and SCARED for days on end. It’s bad enough dealing with this disease on a day to day basis, without an offhand comment making it worse.
Also remember you are ENTITLED to see your own MEDICAL FILE. I’ve been told this by Macmillan Cancer Nurses and also by other medical people and Doctors! I tried to get to see my own notes but was put off this by a Doctor’s comment a while back, but after hearing from a Macmillan Nurse at a meeting, it has changed my mind. It is my RIGHT to see them if I want, and I do.
Just because we want to see our notes – it does NOT make us OBSESSIVE or WORRIED or ANXIOUS. We just want to see out of curiosity what is there. I am SURE that the Doctors would be asking the same. After all if they had cancer would they just sit there and not ask questions….?????
What do you think?!
Please note I am NOT having a go at all Doctors and health professionals as there are some wonderful, helpful, caring and understanding people out there who work hard daily to make our suffering less and help us through this cancer journey. As with anything it is always the FEW who give the rest a bad name sometimes.
I have had some BRILLIANT people helping me through my cancer and I appreciate each and every one of you and THANK YOU for what you have done to help me.
Also check out the Royal College of Surgeons Website – under Communications Skills Initiatives section 4.4 Communications (copied below for you all). I think this should apply to ALL Doctors and not just the surgeons.
All surgeons should:
* listen to and respect the views of patients and their supporters
* listen to and respect the views of other members of the team involved in the patient’s care
* recognise and respect the varying needs of patients for information and explanation
* insist that time is available for detailed explanation of the clinical problem and the treatment options
* encourage patients to discuss the proposed treatment with their supporter
* fully inform the patient, and their supporter of progress during treatment
* explain any complications of treatment as they occur and explain the possible solution;
and act immediately when patients have suffered harm and apologise when appropriate.
I will get off my soapbox and give you the “Patients’ Rights” document now…… quickly followed by the Living with Cancer: what you can expect from the NHS document.
This Declaration of Rights of People with Cancer has been produced by Cancerlink to bring the needs of people with cancer to the attention of health professionals, employers and the general public.
These rights are designed to act as a starting point for debate about how the needs of people with cancer are being met and how service provisions could be improved.
The following do not all exist as legal rights but are felt to be fundamental to the well being of people with cancer.
I have the right:
The Declaration was launched in 1990 by Cancerlink, now a part of Macmillan Cancer Relief. It was produced by people representing cancer self help and support groups around the country, in consultation with medical professionals and national voluntary organisations.
Further details of what you can expect from the NHS can be found in “Your Guide To The NHS”. Please phone 0800 555777 between 8am and 6pm to request a copy. You can also download a copy from the DOH website @ www.doh.gov.uk
Once again, I’d just like to say that the majority of my care through this has been brilliant, it is just the few occasions where things have not been right that stick in your mind. I wish I had seen this document BEFORE I started my treatment though!!!
Please keep this document in mind whenever you see a Doctor or medical professional and remember – it is your RIGHT!
If you or someone you know has been diagnosed with cancer, you’ll what to know what you can expect from the NHS cancer services. This has not always been easy to find out in the past.
However new national guidance recommends what cancer services should be in place, and how they will help you have a good quality of life – throughout your experience of cancer and whether you are receiving NHS care at home, hospital, a hospice or care home.
The principles are based on a document from the National Institute for Clinical Excellence (NICE) that was published in Spring 2004 called Guidance on Cancer Services: improving supportive and palliative care for adults with cancer. There is both a full and short version available from the NICE website: www.nice.org.uk
Or you can call 0870 1555 455 quoting the following numbers:
Full guidance N0474
Short version N0476
What does the new guidance mean for you?
In essence it means you can expect a good quality of care and support to allow you to live your life the way you want to. Services should be appropriate and accessible to you, whatever your culture, ethnicity of diability. You, your family and carers have important skills and knowledge and abilities, so you should be involved in decisions about your care, and the team of people looking after you should listen to your views and act upon them as far as possible.
In particular it means:
What can I do if these things aren’t happening?
These are recommendations that have been set out by NICE, not rights. They have been welcomed by health professionals and services int he NHS and elsewhere will be expected to make sure they meet them. But this could take time. Achieving these goals depends partly on having enough trained staff.
If you have any particular concerns about your own care that you would prefer not to raise with the professionals looking after you, contact the Patient Advice and Liaison Service (PALS) at your hospital/local Trust, or if you live in Wales your local Community Health Council.
If you or someone you care for would like to become involved in planning or commenting on cancer services, you can ask a health professional to put you in contact with your local cancer partnership group. Alternatively you can contact CancerVOICES, an independent network of people affected by cancer who want to have their say in improving cancer services.
You can get more information about CancerVOICES from www.cancervoices.org.uk or from the Macmillan CancerLine on 0808 808 2020.
I also have a webpage on this subject as I belong to a CancerVOICES Group and we are all working towards positive change to help cancer patients and the service as a whole. You can find it here if you would like further information.
Shout out loud and make your voice heard!
© Macmillan Cancer Relief, March 2004