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....?????
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:
to equal concern and attention whatever my gender, race, class, culture, religious belief, age, sexuality, lifestyle, or degree of able-bodiedness
to be considered with respect and dignity, and to have my physical, emotional, spiritual, social and psychological needs taken seriously and responded to throughout my life, whatever the prognosis
to know I have cancer, to be told in a sensitive manner and to share in all decision-making about my treatment and care in honest and informative discussions with relevant specialists and other health professionals
to be informed fully about treatment options and to have explained to me the benefits, side effects and risks of any treatment
to be asked for my informed consent before I am entered into any clinical trial
to a second opinion, to refuse treatment, or to use complementary therapies without prejudice to continued medical support
to be employed, promoted or accept on return to work according to my abilities and experience and not according to assumptions about my disease and its progression
to easy access to information about local and national services, cancer support and self help groups and practitioners that may be useful in meeting my needs
to receive support and information to help me understand and come to terms with my disease, and to receive similar support for my family and friends
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:
You can be involved in decisions
You can always express your views or worries about your treatment and care, and ask as many questions as you like. The health staff caring for you should allow you to do this and support the choices you make, wherever possible. You know more than anyone else about how cancer affects your life, so it is important that your views are taken into account.
You can expect your health team to communicate clearly with you
You should feel confident that the doctors, nurses and other health staff caring for you are honest and sensitive when talking to you, and explain things in a way you understand.
You can expect your health care team to communicate clearly with
You should also feel confident that all the health and social care team members are communicating well with each other. You shouldn't have to keep repeating your story unnecessarily, because all of those caring for you should work together and keep each other informed of developments.
You should be told where you can get help and advice
You should be given the name and contact details of a member of your care team who is familiar with your treatments and care, and who you can get in touch with if you need any information or advice.
You should be offered as much information as you want
If you want to know more about your cancer, its treatments, and the support you can get (from self help groups and complementary therapies, for example, the information should be freely available to you. The health staff looking after you should offer it and be happy to discuss it with you. If you do not get the information you need, you are quite entitled to ask.
Your social and practical needs are important
The health staff looking after you should be aware that your needs are not only physical and medical. They should ask you about the kind of practical and social support you may need as well - for example, childcare, cleaning, shopping or money and benefits advice. They can also put you in touch with people and local organisations who can help.
Your emotional and spiritual needs are also important
Health staff should be aware that some people want emotional and spiritual support, and help you to find it - if that is what you want. Feeling shocked and upset is normal. Talking to other people who have had cancer may help - through self help groups for example. I fyou are finding it particularly hard to adjust, you may want support from one of themany types of health professional who specialise in helping people cope with the emotional consequences of cancer.
You should be offered help living with the effects of cancer and
Some NHS services, known as rehabilitation services help people manage the effects of cancer and its treatment. These services - provided bvy people like physiotherapists and dieticians - should be available to people before, during and after treatment. You can ask about the services available to help you live with any changes you are facing.
Your family and other carers are important too
Health and social care staff should ensure that your families and friends are asked about their needs, particularly at crucial times such as diagnosis or bereavement, and get all the emotional and practical support they required. If it isn't offered, you or they are quite entitled to ask.
You should expect a speedy response at times of greatest need
If your needs are changing rapidly because your cancer is getting worse and you are very ill, medical, nursing and social services should respond and adapt quickly to ensure that you maintain the best quality of life. You should feel confident that specialist advice is available 24 hours a day.
Your preferences about where and how you die should be respected
If time is short, the health staff looking after you should gind out about your wishes and needs (for example, whether you wish to remain at home or continue with treatment) and act on them - if that is what you want. The wishes of your family and carers should also be taken into account.
You can be involved in making cancer services better
Those who plan NHS cancer services have a responsibility to involve people with cancer, and use their valuable experience and expertise to help improve standards. If you want to do this, you should be supported - for example by being put in touch with your local cancer partnership group or Patient and Public Involvement Forum.
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