Hi all, I am terrified, as I have just opened a letter from the hospital, it’s a questionaire called Sheffield Profile assessment and referral to care?
Is it only sent to people who are terminally ill???
Jacky
Hi Jacky
Is there a phone number on the letter so you could enquire why it has been sent to you.
You could also give our Helpline a call in the morning to talk things over- they’ll be able to offer lots of information and support. Theopening times are 9-5 weekdays and 10-2 on Saturdays. 0808 800 6000. Calls are free and confidential.
Take care
Very best wishes
Janet
BCC Moderator
Hi Jacx, I’d check but doubt it. We have an Holistic Centre in my hospital at Middlesbrough. Anyone suffering with cancer can take advantage of the therapies. They do such things as aromatherapy, reiki, massage, counselling, etc. Its a really lovely place and is staffed by a lot of volunteers. They also have a support network that meet there monthly and I went last month. Its good to spend time with people who understand what you are going through and feeling. I’ve been referred for aromatherapy as I’ve just started chemo. Hopefully it will help me relax and feel better about the whole process. Good luck and make the most of the therapies available
Shazza xx
Thank you for reply, had a bit of a wobble last night when I opened the letter and googled SPARC, which relates to support and palliative care for patients. I haven’t got results from masectomy/snb yet, so suspect it is just a general questionaire sent by hospital admin. In the cold light of day, it looks like they want to know how I have been coping with the diagnosis/treatment etc over the last month. I wish the BC nurse had told me to expect it though…must remember not to ‘Dr Google’.
J xx
Hi Jacky, I hope you don’t mind me replying. I was just wondering if you work for NHS as my Occupational Health have a service called ‘CARE’ who contact & support people when off work. I may be totally wrong, its just I have received a letter from ‘CARE’ but it is inconnection to NHS Occ.Healh as I’m a NHS worker. I’m sorry if I’m wrong & hope you get this sorted, love & hugs
Hi Lady in red, no, I don’t work for NHS. I’ve only been off work since 5 Nov. The letter/questionaire has a pre paid envelope to return to the Breast care nurses at my hospital. It has no phone number to ring to discuss it, and says to send it back via post or bring it to next hospital appointment. (which is Wed for results) It says it will be passed to all relevant people.
Shazza, your holistic centre sounds amazing, don’t think there is one at mine.
J xx
There was a whole thread I read (SOMEWHERE???) about how “palliative care” was NOT just about end of life, but pain management and quality of life throughout serious illness. Also, a google search of SPARC suggests that it is being used as an “emotional health measurement” widely in the treatment of cancer patients NOT just secondary or terminal patients. This is just a teeny bit of reassurance, of course on Monday morning you should call someone who actually knows!
Meanwhile, my hospital has a holistic centre that does all sorts of relaxation, massage, reiki, etc. that I didn’t know about till AFTER all my treatments. : ( So you should ask you bcn or your onc or surgeon to see if there is somewhere nearby. It can really help!
Hey, Jacx, got to thinking about this and googled some more (!) and found a copy of your SPARC questionnaire–YES!! it is the same questionnaire that I fill out every time I go get my arm measured for some lymphoedema study I am involved in. I’ve never known why I have to fill in the form (and the last page where you have to draw a line to how you feel that day always makes me want to laugh), but I have primary BC and am not at the end of life, and do not have a terminal diagnosis at the moment. I am positive it is not just for terminal or end-of-life patients.
So please don’t worry. One of the things I hate about this dratted BC is the dread that hospital letters now give me.
xxx
This sounds like a questionnaire I’ve filled in a couple of times as part of the Avastin trial, the line to how you’re feeling stumps me every time, because I’m usually wanting to answer “p*ssed off actually”. It also asks if you’re feeling feminine if I remember right, and something about your love life?
Yes, that “are you feeling feminine” question gives me a BIG PAIN, I’m not sure why–it may just be because forms like that make me irritable. I always wanted to write in “What, you don’t think this wig flatters me???” Now that I have stubble, it’s more like “are you referring to my butch hairdo???”
I think that, of all the useful questions they could ask, why ask daft ones like that? By daft I mean it’s not a simple and straightforward answer… An accurate answer would have been - I feel like me, but a tired, worried, drugged up baldy me. Ive just been asked to pee into a plastic cup, which doesn’t enhance my feelings of femininity, and I’m sat in a busy hospital waiting area - my chemo appointment is currently running two hours late, and the lady next to me is reading this over my shoulder. She wants to know how come I’ve got a plastic cup to pee in and a questionnaire when she hasn’t, and I don’t know enough to explain why I’m on the Avastin trial and she isn’t, and now we’re both worried. So, not sure if that rates a 1) very, or a 5) not at all.
However I’m sure it must help someone 
Hi, just a quick update to say that the BCN said it is a new form they send out to all recently diagnosed cancer patients. They’ve been sending them for about a month now. They apologised for the upset it caused especially as it was received at weekend. I mentioned the google search, and she said they’ll look into how to improve the wording on the covering letter to try and reassure people (like me).
It is used to ‘capture’ patients who may not necessarily pick the phone up if they need prectical help at home/emotional assistance etc., but some will complete a questionaire, so the BC team are aware of possible problems and can act on them.
Jac x
Thanks for the update, and WELL DONE on articulating how upset you were. I’m glad they are going to work on their letter. I think that so often they don’t tell us things thinking we will understand and we don’t. Two weeks after I was diagnosed I got the letters from the hospital with my appointments for scans, but since I didn’t realise it was routine, I was convinced they knew it had spread and became terrified. If I’d only been warned in advance!
Good luck with your treatment!! xx