MEDICAL MATTERS

[Marilyn]

I hadn't heard you mention the strong family history before...

[plaques]

It also opens the route for Susan to be able to claim as carer if the need arises.

First on the design of the form you will have noticed that some of the early questions are repeated much later on but structured so that you may give a different answer to the first one. No problem for those who are honest in their answers but could catch out those who are trying it on a bit.
The care allowance that you have claimed for is yours to dispose of as you like. You could even spend it on dog food if you want. Giving it to Susan is your prerogative.

[Marilyn]

Really???? ( oh...don't wind me up Plaques).
No wonder people are hiding out in the back of lorries trying to get to the land of milk and honey!

[chinatyke]

Really???? ( oh...don't wind me up Plaques).
No wonder people are hiding out in the back of lorries trying to get to the land of milk and honey!

...Or leaving as fast as their legs can carry them!

[Tizer]

The Attendance Allowance form must have been simplified since we first got the one intended for my father. Printed out, it was 40 pages long and very confusing. Some of you might remember that I put a photo on OG of the 40 pages laid side by side across the floor of a room, out through the door and down the hallway. We are usually able to deal with any form due to our background in business and science (which thrive on forms) but we gave up on the Allowance form, it was just too confusing and vague. Later, when my father went into the care home they wanted us to do a form but someone from the local social services came and spent a couple of hours with us filling it in. In the end it was all wasted time from our point of view because the council then raised his fees because he was getting the allowance and he got little from it. We realised the council had helped because it was really so that they could get the money.

[Marilyn]

I do remember the photo, Tiz.

[Tizer]

I've found the photo and have to admit that I exaggerated the number of pages - it was 30 not 40!

[Moh]

Ian & Stanley are lucky to have good backup - I get a phone call once a month from the district nurses. I needed some stronger pain killers, went to the doctors, she gave me co-codomol and has written to the oncologist for advice- no reply after 2weeks!

[PanBiker]

I take it this is Lancashire way Moh? My care was split between Airedale (AAU) for diagnosis and then mainly at LGI Neurosurgery wing. The newer bits of Airedale and almost all of LGI are heavily IT enabled. Lots of Ipads for obs and general nursing care, copied onto your bedside written notes but already in the electronic system. Medication via laptops on the dispensing trolley, any requests for changes fed directly to the doctor on call at the time. Portable laptop on trolley accompanies the doctors on their rounds so any updates go on the system immediately. They have other laptops at regular spots along the ward corridor, all practitioners from, consultants to doctors, nursing staff and any others such as physio and occupational therapy have immediate access, it works well and means that no one associated with your medical care is very far from the latest information. There is of course the nursing station hub in the centre of the ward. Longest I had to wait for a change of medication to be signed of by a doctor was two days but that included a short staffing day.

I have two direct contact operatives assigned to me for any queries that I might have regarding anything related to my recovery. They ring me to check on my progress as well. Could your doctor not have emailed or rung the consultant Moh?

[Moh]

She may have done it by email but I thought he would have replied by now.

[Marilyn]

Woooohooo...hubby's cystoscopy ALL CLEAR for the second time! They will leave him alone for 6 months now. Good news indeed. Hope your news is just as good Stanley.

there will be dancing in the moonlight tonight folks

[chinatyke]

Good news! Congrats.

[Stanley]

Tiz, the form I filled in was about 30 pages also and I noted that it had been revised in 2014. It was very clear and easy to fill in.
Maz, definitely not a land of milk and honey in most respects but the NHS is a wonderful benefit when, as in over 90% of cases, it works well and yes, I suspect we are very lucky with provision in this area.
Moh, you are right, Ian and I are getting first class service.
I am delighted to hear that Dave has had the all clear. That's what I want after tomorrow but at the back of my mind is Janet. When they gave her the same scan after successful treatment of the main tumour they found other sites.... Things like that weigh on your mind. Having said that, I'm feeling fine and I am not in her position so I am optimistic!

[Wendyf]

Good news Maz. Col will have his final check in March and then should be signed off....hopefully!

[Sue]

Maz, Attendance Allowance isn't about attending hospital, it's a benefit which goes towards paying for someone to attend to you if you need care at home. I'm sure that all Stanley has done is to send for the forms to fill in if he needs to, which is very wise considering his age ... cancer or no cancer! No one will have spent time doing paperwork apart from putting an address label on an envelope.

I glad you explained this Wendy as I was about to

[Marilyn]

Yeah...I get that now. Thanks...

[plaques]

Yeah...I get that now. Thanks...

Sorry but you are probably still mistaken on the mechanics of it all. Its probably one of the most misunderstood benefits that we hand out. See this link. Link. There are numerous other sites that try to explain the confusion but the Government site is a good starting point. There are hundreds of urban myths that are repeated over and over again mainly through ignorance of the system. A typical one is " The mother gets it for looking after her daughter and the daughter gets it for looking after her mother" . Please whatever you do don't repeat this because its all b.lls.

[Tizer]

Tiz, the form I filled in was about 30 pages also and I noted that it had been revised in 2014. It was very clear and easy to fill in.

That fits - my photo is dated April 2013 so they must have improved the forms dramatically since then.

Wendy wrote: `.. it's a benefit which goes towards paying for someone to attend to you if you need care at home' and I would just add that `home' can mean a care home as in my father's case.

[Marilyn]

But you can choose to buy dog food with that money?
Just asking....
( personally...I think if you are getting an allowance to pay someone to aid in tasks of daily living ( eg...wiping your bum)...then it shouldn't go toward dog food. And I love dogs...)

[Tizer]

I'll have to let Plaques answer that question!

[PanBiker]

Good news for Dave and hopefully Col, thinking of you also Stanley. I see my consultant for my first official review tomorrow so back to LGI. Should just be a catch up as It's the next one where I go back in the scanner. Late afternoon appointment so the trains may be a bit manic coming back, we may get tea out to avoid the rush, don't want to have to stand all the way from Leeds to Skipton on the commuter run.

On the practical and cost efficiency side of things, I availed my self of a senior rail card, this will be my second journey on it so the one after this will see it more or less paid for. Just over £6.00 return to Leeds isn't bad, cheaper than the bus to Skipton. The bus from outside Leeds station to LGI is just £1 and runs every 15 minutes, one way system in Leeds so you catch the return at the same stop that you get off, right outside the Brotherton wing.

[PanBiker]

But you can choose to buy dog food with that money?
Just asking....

Once an allowance is made,how can you check for what you would perceive as "correct" use without asking for receipts and having the mechanism to to administer the same?

The local cancer charity that I am a trustee of operates under the following mission statement:

Barnoldswick and Earby Bosom Friends

A local group for people affected by cancer


Our Mission Statement

To alleviate physical, mental or financial distress or hardship of persons living locally and their families and friends affected by cancer, by financial support, holding support meetings, home visits, or provision of transport to hospital. Finance is obtained by holding fund-raising events or through charitable donations.

Charity Registration - 1085911


Registered with local Doctors, Cancerlink, Macmillan and Breakthrough Breast Cancer

We give non means tested financial support across the board. First of all we do not have the resources to check out an individuals financial status, but we do appreciate that if you are diagnosed with some form of cancer that is going to require multiple trips to hospital for treatment or may involve you hospitalised the treatment will be free but there will also be a personal financial hit for yourself or your family. If we can help to alleviate this in some small way it makes what we do worthwhile. Whether it's missed mortgage payments, parking fees, transport costs, communication issues for friends and family or simply to help pay for a bit of respite for those thrust into an unexpected caring role. We don't differentiate, how can we? Over the time the group has been in operation we have raised and redistributed over £450,000 back into the community. We would estimate that over the years the vast majority of the grants made to individuals have been used for practical purposes. Very rare that any monies given are used for what some would call "frivolous" matters, having said that who are we to judge, if a good session at the pub makes you feel better, so be it.

[chinatyke]

Over the time the group has been in operation we have raised and redistributed over £450,000 back into the community.

Wow, Ian. That's great! Well done.

[plaques]

I never meant to be flippant with my dog food analogy, once granted its up to the individual how they spend it. My only adverse observation is that some people try to save it? For the rest, especially the older end, having to ask for help is a last resort. Often they need, and should get, far more assistance than they are offered. PanBiker has highlighted Bosom Friends as an example of charities trying to fill the gap which under the present austerity "régime is an impossible task. But without them you would see real hardship that we thought we had seen the back of.

[PanBiker]

Dog food or kennelling could even come into the equation as well P. Unexpected expenses whatever they are can all become a worry that you can do without. It is well proven that a positive attitude along with supportive family and friends can have major benefits for recovery. It works or we would not get the continued support of the community we hope to serve. We also have our centre now with complimentary therapists, regular support meetings and just somewhere to meet if you need to unload or want to chat with others who are on similar journeys or who already have the tee shirt. All is held in confidence and our meetings are open to not just the ones going through the treatment but those that are thrust into the support role as well. I well remember when Sally was diagnosed with breast cancer that we were five weeks into the roller coaster before anyone asked me how I felt! It was Sally's named breast care nurse Judith at Airedale who took me on one side on our fifth visit. Sally's treatment plan was finalised, surgery date, follow up chemotherapy and radiotherapy over at Cookridge. It was a seminal moment on the journey for me and very much appreciated. It was a long time ago now and the support groups and services were not as they are now. If we as a group can offer that support in a more timely manner it is all to the good.