Are the district nurses right?

I think the visits should be spread out more. The lady a couple of doors up has 4 visits per day. The 1st one at 7am and the last one at 10pm she lives on her own and is bed bound.

Hi

There are two issues here... (Aren't there always more problems than we expected?)

I am busy reading a manual on the CHC system at the moment... in another week I would have a definitive answer! This looks complicated, but there is a 'cut through the tape solution' t the end.

I assume the care is paid for by the CHC... If carers are coming in it will be so.

First off the DN is not the one controlling the care unless they are the Care Co-ordinator. .

Technically it is the Care Co-ordinator acting on behalf of the purchaser who is the Commissioning Group. Most people don't know the name of their care co-ordinator because with short staffing they are seldom allocated one, despite it being a legal requirement.

If the D.N. is the care co-ordinator (unlikely) they have to listen to your wishes and saying they can't spread it put is utter tripe.

If there is no care co-ordinator you could telephone the Commissioning Group. This is the person who came and assessed on behalf of the Commissioners. Tell them you are going to telephone the agency and change the times... But I wouldn't and didn't bother.

I just telephone the agency and tell them what I want. They did say they needed to check it and I merely pointed out that I am the customer here. They did it. Actually I change things quite a bit... Liz get's tired more easily I asked for the morning call to be put back and hour and they now just do it. (We look after the carer's and praise the agency - because they are good and things become easy - but you know all of that stuff. Hold your ground no matter which route you take... Explain the 'why' in terms of your loved ones needs and they do not have a case to refuse.

There is no legal limit to four visits! The law states that the NHS must provide care to meed the clinical needs of the patient and this is defined by the Needs Assessment... That's the one the person visiting from the Commissioning Group did. Quite a few Commissioning Groups make up their own rules... these are illegal! Amazing, but true.

What we are in the process of doing (and its easy) is moving Liz's CHC over to a Personal Budget... For some reason Commissioning Groups like this. ( I think they have difficult to meet targets in this area.)

Simply put the Commissioners give you the money directly and you spend it as you like within the agreed Care Plan. You pay the agency and keep the receipts to prove you have spent the money properly. The process means developing a new Care Plan (but the current system keeps running whilst all this is done) and the new care plan should include up to four respite breaks in a Nursing Home. While we were at it we asked for extra hours for carer's to increase the service and even more so I could have a half day off.

It does mean paying bills, but it also means you could use some of the Respite Care portion of the money against getting carer's in for the day if you need to. In other words you can spend the money where you want as long as it is in the agreed areas of need. We were on this system, but something went wrong and we got moved across to the Direct Payment system that your on, by mistake.

Just ring the commissioning group and ask for a new assessment of need and say that you want to move to a personal budget... They know these terms and should put it into (slow) play.

I do hope this makes some sense... It's late and my brain is running on vapour!

Do come back if you want anything clarified.

Cheers n good luck

Kevin

chc should provide care that is needed no matter how many calls are required. Telephone Chc and tell them you need a reassessment for increase care during the night. caring for our relatives with psp is hard enough without us having to jump through all these loops to get what we are entitled to. Be firm with them you can have more than 4 calls a day xx

To confirm what Kevin has said very well, mum gets Chc funding but only for her nursing needs, the assessment showed that only 40 percent of mums needs were nursing the rest are classed as social so mum has to find that side of it which as we all know as carers psp is 100 percent nursing but I ran out of steam to appeal, sorry gone off on a bit of a tangent what I'm trying to say is care agencies were not working for mum cause of bad time keeping and her complex needs. We now receive direct payment and pay a private carer (it took along time to put in place but it was all back dated) the funds are paid into my bank account I opened a new account just for this, the carer is employed on a self employed basis so she pays her tax/national insurance. Every 3 months I have to provide bank statements to prove how the money is being spent xx

CHC, I am sure it must stand for something very rude. Having read various posts about this over the months it is apparent that there are huge differences depending on where you live. Although the legislation is written down the commissioning groups/ health authorities do seems to cherry pick what suits them.

My F did get CHC for him to temp go to a nursing home prior to comming home. He was in hospital then and all the people involved with his care did their bit really well but it was the process of paperwork and what they were required to do that meant it took 3 months. Now in the home we had to kick it off again. Same problems. The report writers are being made to conduct an assessment according to what the maximum funding they think he will get. I know this shouldn't be and it should be his needs that drive the decision.

It won't be long now and he will be home. The current plan that has been submitted is 3 carers 4 times a day. No night care will be provided. I have already been told that "as we are very rural"(6 miles to nearest town) it is unlikely that this will happen. I have asked for 3 pieces of equipment, bed, chair, shower chair. I am paying for a ceiling hoist myself. They won't pay for a portable shower screen. I am funding the new bedroom/ wet room.

It just takes so long. The business about a coordinator is right. There is never one person who takes on that responsibility. The idea of CHC is good , enabling people to stay at home, but the practice of the written intent is not fit for purpose. And I've been told I live in a good area!

Thank you Kevin. The comment about being rural is one that is repeated by OT, DN and social worker etc. I don't blame them it's because they can't get an agency with enough workers. This is why I have not gone down the direct payment route, if they can't find anyone how am I?

I have raised the question of respite and had eyebrows raised and no comment. I noted your note about this. In reality I don't think it will be possible as F has so much specific need with CBD that there is only 1 home that can take him. The 2 hospices in reach don't do respite.

Thank you Satt2015 for this, I do hope you get satisfactory care and Kevin, it is so good to share our knowledge.