Using the Internet
There are Websites set up in many countries. Many of the dud ones seem to have given up, leaving the good ones to survive. And even doctors now acknowledge there is some useful stuff out there!
You still have to be wary when you find a new website, but below are some of the useful and helpful ones I have found! I have added notes that might help when you are looking for the right contact.
If you are in UK, it is often helpful to go to websites in other countries. Although our charities have excellent sites, our NHS sites are sometimes not so brilliant. So try American, Canadian, Australian and European sites (usually with an English option).
ME : If you think I can help, my contact is firstname.lastname@example.org. I can’t answer medical questions, but am happy to help if I can pass on information.
Action Cancer – for those living in Northern Ireland, there is a helpline, information, downloads and some free complimentary therapies. 028 9080 3344 www.actioncancer.org
Age Concern -even if you not an OAP, Age Concern has some of the most practical and sensible advice I have seen for coping with disabilities, benefits, etc. You don’t have to be an OAP to take note of what they say, but if you are you will find they are incredibly helpful. 0800 00 99 66 http://www.Age concern.com/
Anaemia – also known as Anemia in US. This can happen to us when we have to take drugs, and needs expert attention. If you feel desperately tired, check with your doctor just in case you have this. If you want more information, the best website I have come across is www.anemia.org
British Red Cross Depending on where you live, they offer an incredible amount of helpful services, from transporting you to medical appointments, to care in the home. It is hard to give an overall list, as the Commissioners will assess the most important needs in their area, and try to step in and fill them. Go to their website to find out what is available in your region. There may be a charge for some services. Red Cross and Red Crescent are in countries all over the world. See your local branch for access to their services. http://www.redcross.org.uk
Breast Cancer Care 0808 800 6000 or 020 7620 0077 www.breastcancercare.org.uk
Breakthrough Breast Cancer 08080 100 200 www.breakthrough.org.uk
Cancer Club’s founder, Christine Clifford Beckwith, is just my type of person. Waking up in the middle of the night, she started to think of the humorous side of cancer, and from this came a stream of cartoons – which she has turned in to books. She founded The Cancer Club®, an organization that specializes in marketing humorous and helpful products internationally to help people with cancer. The club has a newsletter, and to see one of her cartoons click on Hair, Hands and Feet, and you can order these books by clicking on the Amazon icon or direct from www.cancerclub.com
Cancer Myths The Canadian Cancer website has an excellent section exploding ‘Cancer Myths’. Look up the myth and the reality under Cancer Myths on www.cancer.ca/Canada wide and type in Myths in Search window.Chris
Chris’s Cancer Community is a website edited by Chris Lewis, my type of ‘get up and go’ person, www.chris-cancercommunity.com
Christie Hospital This hospital is probably THE leading cancer treatment hospital in Britain. There is an informative website, even if you aren’t an in-patient, and full marks to them – under Complementary Therapies they have a short list of other centres that provide these services in the area. www.christie.nhs.uk
Clinical Trials – there is nothing to stop you, if you wish, asking to join with any trials you think might be useful. If you are treated privately, nurses have told me that they think it a shame that private patients lose out on this. Obviously you will ensure that, as far as you know, these trials are conducted in the most professional way possible – and you should be aware there is always a risk. To find out what’s going on http://www.cancerhelp.org.uk/trials/trials/default.asp
Cancer Advocacy Very useful site for many pieces of info about cancer. http://www.canceradvocacy.org/toolbox/
Cancer Counselling Trust www.cancercounselling.org.uk 020 7704 1137
Cancer Information Support Services Set up in Wales to provide Information and a Helpline. 01792-655025 www.ciss.org
Cancer Research UK 0808 800 4040 0207 7121 6699 www.cancerresearchuk.org Don’t be put off by name – this is one of most sensible and useful sites with accurate and helpful information, with with a world-wide reputation for excellence. They have useful info also on www.cancerhelp.org.uk They also have an interesting free newsletter: subscribe by applying to email@example.com
CARERS ORGANISATIONS IN UK:
Carers UK 0808 808 7777 www.carersuk.org.uk
Crossroads Caring for Carers (Northern Ireland only) 028 9181 4455 www.crossroadscare.co.uk
www.chemocare.com Scott Hamilton was one of world’s top ice skaters, then developed cancer. He now fronts up webinformation sites such as this one. Just about every side effect from chemo is listed, and some from hormonal drugs. The site could be useful to print out to doctor who doesn’t believe your side effects could be caused by drugs. It also gives some very sensible, albeit limited, advice on dealing with many side effect problems.
Cyclists Fighting Cancer
provide bikes, trikes and equipment to children and young people whose lives have been affected by cancer. Their primary aim is to help children to reintegrate and rehabilitate after treatments in a fun and exciting way. Many of the Fund-raising events have a cycling theme, and if you like cycling, joining in is a good way to get exercise.
They also have a good fund-raising idea – offering a T-shirt that will stand out at sports events. If you donate £50 or more, you get the T-shirt – and knowing human nature, someone goes onto the website to donate a tenner, but seeing the message will encourage them to be more generous! www.cyclists.org.uk
Trying to get a reply out of the NHS when something has gone wrong makes most patients give up – which could be what ‘they’ want! However, you can have an Advocate to help you negotiate the minefield: POhWER is an organisation that supports you when making a complaint, has a self-help pack, puts you in touch with helpful people, and can meet you, go through paperwork and come to meetings. 0300 456 2370 www.pohwer.net
The Daisy Network. Information if you have suffered a premature menopause. www.daisynetwork.org.uk
DANA FARBER CANCER INSTITUTE This American cancer centre, based in Boston, USA, is acknowledged to be one of the most important cancer centres in the world, and consistently rated by doctors, patients and the press as one of best in world, Its website is extremely helpful and there are special sections for patients written by patients! Much of the information on my website, especially for Cancer in the News, comes via helpful contacts at this center. And on a personal level I have found they are now the source I turn to first when I have a problem. www.dana-farber.org More information under USA below.
DISABILITY, WELFARE RIGHTS AND BENEFITS
You are not alone if you find you are having to fight for what is lawfully your right: organisations are there to help. When I needed the Council to do something, their response was “if we do this for you, it could set a precedent for other disabled people”. I just phoned Macmillan – they offered a grant – and although I said I didn’t need this, I used the offer to shame the Council into doing what they should be doing. The following have seen it all before, and are full of useful information. So phone or contact these organisations – they are incredibly helpful.
* Age Concern www.ageconcern.org.uk 0800 00 99 66
* Disability Now -magazine and website. www.disabilitynow.org.uk 020 7619 7323
* DISS – Disability Information Services www.diss.org.uk 01372-841 395
* RADAR www.radar.org.uk 020 7250 3222
* Community Legal Service 0845-345 4345 http://www.cl;sdirect.org.uk
* Scottish Legal Aid Board (Mon-Sun 7 anm – 11 pm) 0845-122 8686 www.slab.org.uk
* Northern Ireland Legal Services Commission 028 9040 8888 www.nilsc.org.uk
* Dept. Work and Pensions – Disabled People and Carers 0800 88 22 00 www.dwp.gov.uk
* Northern Ireland 0800 22 06 74
* Disability Living Allowance / Attendance Allowance 08457-123 456
* Carer’s Allowance 01253-856 123
Eve Appeal Info about the 5 gynaecological cancers 15B Berghem Mews, Blythe Road, London, W14 0H Tel: 020 7605 0100 www.eveappeal.co.uk
General Council for Massage Therapy www.gcmt.org.uk
La Roche Posay spa and treatment centre. They developed the La Roche Posay skincare products, which have now been sold to L’Oreal, but are still prescribed in hospitals and have undergone over 20 clinical
Look Good, Feel Better Set up by the giant Estée Lauder company, their idea has spread into countries all over world. Not only do they offer an afternoon of fun when patients finish their main treatment, but everyone who takes part goes off with enough make-up to last for several months! 01372-747500 www.lookgoodfeelbetter.co.uk
Lymphoedema Support Network www.lymphoedema.org 020 7351 4480
Macmillan Cancerline 0808 808 2020 www.macmillan.org.uk
Marie Curie Organisation www.mariecurie.org.uk www.mariecurie.org.uk/patientsandcarers is a direct link to patient and carer pages. This organisation is brilliant at looking after patients needing palliative care – but also does so much more to help cancer patients.
Medical Records : If you need to see your medical records, and find medics are being obstructive, remind them everyone is entitled to view their own health records. All competent patients may apply for access to their records under the Access to health records Act 1990 and data protection act of 1998 www.bma.org.uk
MedLaw The MedLaw website is a self help tool for patients to make applications and appeals for NHS funding for treatment. Information and guidance is provided on the processes to follow, the forms to complete, the evidence required and on the law. It is written clearly, easy to understand, with a lot of sensible advice.
As they say, “many treatments are not routinely funded by the NHS and these include newer treatments for rare cancers, rare disease, and surgery. Consultants and GP on behalf of patients now have to make applications and appeals for funding under what is known as the Individual Funding Request (“IFR”) process.
For cancer patients, the Interim Cancer Drugs Fund acts as a “back stop” so you can apply to them for further funding for cancer drugs only once you have exhausted the application and appeal process”. 01752 872123 or 07812192832. www.medlaw.eu
Memorial Sloan Kettering is one of most famous cancer centres in the world. Respected by oncologists worldwide, it has useful, but cautious, information on http://www.mskcc.org/mskcc/html/1990.cfm (clicking on the publications box on the right side will take you to some journal articles) and http://www.mskcc.org/mskcc/html/58022.cfm
Metastatic Breast Cancer Network gives information, education and raises awareness www.mbcnetwork.org
National Electronic Library for Health is working with NHS libraries to develop a digital library for NHS staff, patients and the public. www.library.nhs.uk
National Osteoporosis Society For general information and charity publications phone the general enquiry line on 0845 130 3076, but if you wish to speak to a nurse about osteoporosis contact the helpline on 0845 450 0230.
Talking to their helpline, they have an active person campaigning and talking to politicians; this is very much needed as the way we treat this disease, compared to how it is handled in Europe, is disgraceful. And it can help them with their work if you become a member of the National Osteoporosis Society – to join click here. Membership provides quarterly magazines to bring you up to date with all aspects of osteoporosis as well as supporting the charity’s work. 0845-450 0230 www.nos.org.uk
NHS If you want information about the NHS – What it does, how it works, and how to use it – . It also provides links through to other NHS organisations and local services. I take no responsibility for accuracy of statements on this website! www.nhs.uk
NICE National Institute for Clinical Excellence – the organisation that has to approve drugs before they can be supplied by NHS. They nastily offer an 0845 number, but you can try the alternative contact number for main reception: 0207 045 2000 and for the Enquiry Handling team +0161 870 3002 (0900 – 1700 Monday to Friday) www.nice.org.uk
Occupational Therapy is one section of NHS which works extremely well – if only you knew about it. OT can provide marvellous air mattresses to make lying in bed softer and more comfortable, and when I decided it was too tiring to go in to work every day, and I would work from home, round came Craig to tell me what to do. This included painstaking advice on the right chair – he got one company to send a trial – sent it back because it cost over £1,000 – then found Matt who works at SitSmart. He came round, measured up, asked me what I wanted, and I have ended up with a superb chair, in colour I like (blue) and Sitsmart are going to offer a special rate if you mention this website of £136. 01892-510202 www.sitsmart.co.uk
Office of Oncology Drug Products (OODP) http://www.fda.gov/cder/Offices/OODP/default.htm
PAC (positive free counselling service) 01373-455255
Polio – This can affect your cancer treatment; you may have had this as a child, and totally forgotten. But if you are having an operation it is vitally important to inform your anaethetist – and to make sure they have read Dr. Spencer’s paper which can be supplied through the Polio Fellowship. My anaethestist totally disregarded the mention on my admission form, and as a consequence it took me about two months to recover from the anaesthetic. When I was faced with a seven-hour operation shortly afterwards at the Royal Brompton Hospital, my surgeon Mr. Mario Petrou, together with Dr. Hunter, took this on board, consulted with my polio doctor, asked me inumerable questions, and read Dr. Spencer’s paper. Result – I sailed through the op. without a single problem. More information from http://www.britishpolio.org . 0800 018 0586.
Private Treatment . Friends might tell you that you will be lonely in a private room on your own; don’t believe it. Today you are rushed through surgery, and by the time you are waking up and feeling ‘I fancy something to eat’, the doctor comes in and says “you can go home now”. Chance would be a fine thing – but you won’t have a moment to feel lonely! To find a selection of private hospitals; www.privatehealthcare.co.uk
Prostate Cancer hhttp://www.prostate-cancer.org.uk/info/publications_toolkit.asp
Scotland – CLAN – Helpline and support activities 01224-647000 www.clanhouse.org
The Facts About ….. This website belongs to the Cosmetic, Toiletry and Perfumery Association. Yes, there will be lots of people who throw up hands in horror at the thought of me recommending a ‘commercial’ site. But millions of us who use their members’ products every day, and are grateful that their products keep skin lesions etc. at bay, will welcome the sensible, factual advice on this site about all sorts of ‘new’ words – and what they mean. In defence of this industry, if one millionth of the things they are accused of by pressure groups came true, there wouldn’t be any skincare sold: companies would be too scared of being sued. www.thefactsabout.co.uk
Treatment Abroad. Over 75,000 of us went abroad for treatment last year, and if you want to find out more the company www.treatmentabroad.net
UKONS United Kingdom Oncology Nurses Society has a very information website, but written – obviously for nurses, so has a lot of jargon. However, for factual information, it is excellent. www.ukons.org/downloads/index.html
Wales – Tenovus Helpline and support 029 2076 8850 www.tenovus.org
Wheelchairs – if you are having problems, or don’t know which chair to buy, this website has information from other users and was set up by John Dewar, a carer who couldn’t find information www.tell-me-first.co.uk
Work related – Telling colleagues and managers . This is a really sensible site on what and how to tell colleagues you have cancer. http://www.cancerandcareers.org/women/share_news/how_to_tell_people_you_have_cancer/
There comes a time in all our lives when we are spitting about lack of help and/or information we can find from health professionals.
In Britain, everyone from drug companies to nurses abdicates responsibility and says, “ask your GP”. So when your GP has just told you, “you know more about cancer than I do”, one of these websites might be able to deflect anger – and even give you helpful information.
GOOGLE SCHOLAR A good source of medical information when you need details of clinical trials, and other stuff to shove under doctor’s noses when they turn them up because you aren’t medically qualified. www.scholar.google.com
ROY LILLEY, well-known as a blogger extraordinaire, edits www.nhsmanagers.net . His comments are always to the point and I often laugh out loud when I read them.
MAMMOGRAMS There is a huge debate going on in medical circles about to screen – or not to screen. I am NOT medically qualified, but if you want to find out about information not to screen, Mitzi Blennerhassett has a very informative blog about screening mammography at www.evenstarsexplode.wordpress.com
MEDICAL LESSONS is a serious blog, really aimed at doctors, but worth reading because if you happen to have what it’s blogging about, you learn an awful lot! http://www.medicallessons.net/
JUDITH POTTS Judith was an actress, had breast cancer, and now produces a lively blog for the Telegraph http://blogs.telegraph.co.uk/news/judithpotts/100140789/nhs-improvement-helping-change-cancer-care-in-britain/
PUBMED This site comprises more than 21 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites. Doctors use this, so they can’t turn up their noses if you cite PubMed as your source. And, what doctors in UK don’t tell you, it is an American site, set up and run under US Government. So info is really up-to-date. http://www.ncbi.nlm.nih.gov/pubmed/
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