http://www.telegraph.co.uk/health/women_shealth/7895273/Abandoned-by-the-NHS-I-was-all-alone.html
article in The Daily Telegraph
I think this link will take you to my piece in the D Telegraph about being sent home from hospital too early.
The piece is having a good response -
I received my first Christmas party invite today, from Matalan!
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Hi Jane,
ReplyDeleteI was appalled to read about the shocking lack of care you received after your cancer treatment in the Telegraph. Yet sadly you are not alone in terms of lack of adequate aftercare.
Patients often tell us at Macmillan they feel abandoned after treatment and they are left with problems that aren’t dealt with. Your story is sadly a perfect illustration of why we need a complete overhaul of NHS care for patients who have been discharged following cancer treatment.
Macmillan is campaigning for the governemnt to ensure all cancer patients have care and support they need to help them get their lives back after treatment. New survivorship aftercare services would equip patients with the tools to manage the long term effects of treatment, help them get back to work, provide advice on healthy living, monitor for recurrence and ensure speedy re-entry to the system if their cancer comes back. We want every cancer patient to have a personalised care plan when they leave hospital, in which they know all the follow up stages of their treatment and know what support is available to them.
I'm also sorry to hear that you weren't told that prescriptions are free for cancer patients. Macmillan successfully lobbied on this and got the law changed over a year ago to exempt cancer patients, but it seems there is still more to do to get this message across.
Best wishes,
Anna Brosnan
Macmillan Cancer Support
Dear Anna,
ReplyDeleteThank you for your interesting comments.
I realise that in my piece I included a good example of a cancer support nurse coming to the rescue!
I do wonder if all these new plans for change will work. They seem to rely too much on GP input and of course there is so little money now available.
I too read your piece and was shocked and saddened. Saddened that you have this damn thing and shocked about the brutal treatment you received from the NHS.
ReplyDeleteMay not be your bag, but Macmillan also run an excellent online patient-led support group. Informative, often funny in a British way, and a great way of connecting to the only people who really know what you're going through.
ACOR [American Cancer Online Resource) is worth a try too. A bit gung-ho in a "We're gonna whup this critter's ass" way, but always an excellent source of info about new treatments that are coming along in trials - many doctors use it to keep abreast of developments, which is tribute to its knowledge base.
Big hug for all you face. Top tip - be the impatient patient. Always demand to be fully informed, to be involved in all decisions about your treatment. Never settle for second best - if it's not good enough for you, it's not good enough. And if you have a question ask, ask and ask again until you are satisfied with the answer - even if in the end is "We really don't know. Wish we did, but we don't."
I haven't tried on line support yet, except to the Macmillan Nurse, but I have been getting support by going to the Maggie's Centre at Charing Cross hospital. I resisted that kind of thing at first, but it really is very good and you can't help getting drawn in when you meet other people with a wide range of conditions, many far worse than mine.
ReplyDelete