HELP! Carer assessment tomorrow morning....

[Gerry123]

Begs the question...

What would be the scenario if you weren't a qualified nurse? Who, where and when would administer the IV's? I can understand that you feel that you administering his medication he is receiving the best care and I agree with that but in reality you are only doing what someone else should have been doing in the first place. What would happen if you fell ill and couldn't do it yourself?

I apologise in advance if I seem a little harsh, but I have a carers assessment next week also in regard to going back to work. I intend to go eye through the needle with the person that is coming to see me in regards to what would happen if I was at work and school rang about my son needing to be picked up etc etc, there is a myriad of scenarios that are possible and I will go through every single one of them. The assessor will earn her keep next Monday and probably regret ever clapping eyes on me.

I guess what I'm suggesting in a nutshell is thinking about the future as well as just for now and the more we can get from whatever service there is, the better it will be long term.

Good luck tomorrow, oops, today.

Gerry.

[charles47]

Gerry, a carers assessment should include planning for emergencies - it's been a part of government guidance on carers assessments since the 1990s but still happens only very rarely.

Jess, Annie is right about the carers assessment not really covering your son's health needs. That really is something for the NHS. But the social worker may be able to help push the NHS - I would go to my son's GP - or specialist - to give this a push, too. As for the suspicious nature of the social worker, don't worry. You have the legal right to have a separate carers assessment away from the person you're caring for.

[Jess]

Thank you all so much for the support and advice! All helps me to focus on how I'm going to get what I/we need. Really all we want is the guarantee that someone will do some medical stuff a few days a year, that I know in advance that they will turn up, so I can plan what I'm doing at work.

Gerry, the hospital trains the parents up to do the IV's at home in many cases. If not your otherwise well child languishes in hospital risking picking up yet another bug.... and home life disintegrates. That's the threat I guess, at the end of the day they can always say to stay in hospital if you can't do it all yourself. I know the Prof at the specialist hospital wouldn't agree with that as he knows a childs life is for living not hanging around in hospital.

I'm going to see the GP this morning before the carer assessment and I'll raise it with him, although I doubt he can do much to help. Really the GP dosn't have access to the community nurses on this one, as it's not him that prescribes the IV's.

The 'local' hospital we use won't send us a community nurse as we live in the wrong area. The hospital we are 'supposed' to go to doesn't provide the level of care we need although the community nurses are based there and do sometimes come out, but only if they have time and they don't want to commit to doing the IV's as it takes such a chunk out of their day. As we don't attend that hospital they feel vulnerable in case he has a bad reaction to any of the drugs (he previously has, but you can't keep an energetic and otherwise well child in hospital for 20% of his life just because he's needing a few weeks IV's). The specialist, tertiary care hospital, is not at all local and it would be hard for them to justify outreach out as far as we are, as a last resort I will ask them though. We are about to move to a different 'local' hospital, but they have previously told me we are also out of their patch as far as community support of any kind is concerned.

I will raise the planning for emergencies though, as my partner is often out of the country and the only other relative is a bit doddery and 85! My son needs 2-3 hours of physiotherapy a day, so someone would have to provide that as well if there was an emergency and dad was out of the country, and I couldn't do it for some reason. Perhaps that's asking too much, but I'll raise it anyway just to see the reaction. When I made the appointment she did say she had all day free......

This is the reality of patient choice I suppose! You can only choose what they want you to have, not what you need. Perhaps social services can push to get the NHS services, in which case perhaps I'll also request some community physiotherapy visits.

Will keep you informed of progress - and there will be progress, I don't like to whinge on without it translating into action!!! The really good thing about this forum is I can talk about my own needs without feeling a right heel for wanting someone to help us with the care so I can do my own thing ocassionally.

XX, Jess

[Jess]

Ah well....didn't get an assessment after all as I refused to let them put my son on their books and they say they can't see me unless they have already seen him, to which I wouldn't agree. Only two days ago he had six different professionals having a look at him at his out patient appointment and I didn't want any more. I thought that as a carer I was entitled to be assessed in my own right, but it looks unlikely. They are checking it out with their legal department and writing to me. Thanks for all your replies, I was at least very clear about exactly what I did and didn't want. I think I must be an awkward person but why agree to something if it's not what you want? Let's see what happens now. BW, Jess

[Matt Hill]

Ah well....didn't get an assessment after all as I refused to let them put my son on their books and they say they can't see me unless they have already seen him, to which I wouldn't agree.

Jess I'm not an expert but from what you've said this sounds like this is unlawful. As a carer you have a right to an assessment and it should NOT be dependent on your son's involvement. Please seek some independent advice.

You can call our advice line 0808 808 7777. Or try your local carers centre

Matt

[Jess]

Hi Matt!

Thanks for the reply. It may be because he's only 10 or something ?? and they feel they have to check him out.

We are keen not to have more involvement as we have had a previous bad experience with professionals communicating with each other, and our son's health was badly compromised by a lot of misinformation. We have a good system right now and don't want any more people involved.

They said it was their policy and would be checking with their legal department though, and get back to us. They were really nice and helpful people, I'm sure they will help if they can but I've got to the point that I won't compromise any more. Sometimes it seems a bit OTT, but since I stopped being co-operative and easy going and started being very direct, insisting on what I wanted and holding my ground, my son's health has improved so much that I am not prepared to give in to professionals any more for any reason.

I'll ring the helpful person at PRT tomorrow and ask what the legal position is or maybe try your advice line.

Thanks again, BW, Jess

[sue31didit]

I am almost 100% sure they are wrong in this.
The carers assessment.........YOU are the carer, they recognize that fact right? if so........then YOU are entitled to an assessment WITHOUT anyone else being there. I talked to my assessment officer today, she says........check it out higher up because this is very wrong. Its about YOU not your son.

[Guest]

The Carers and Disabled Children Act 2000 which came into force on 1 April 2001 gives carers the statutory right to an assessment of their own needs without the consent of and regardless of the wishes of the child or adult being cared for. Once your needs are recognised and there is a plan in place to meet them obviously, as that involves providing care to the cared for person, an assessment of their needs in order to provide appropriate care is needed but the imposition of an assessment of the cared for person as a condition of the assessment of the needs of a carer is, I would suggest, ultra vires.

Despite the legislation I feel that in practice the needs and wishes of the cared for can still take precedence over the needs of the carer and determine what, if anything, is provided to meet these needs and having just gone through what I was led to believe was an assessment of my need for respite carried out on behalf of social services by an agency I discovered that the assessment was more about any risks related to the physical environment and my husband's needs at which there was an insistence that he was present. He did not want to be and was exhausted after a heavy physio session and immediately fell asleep, after a few sticky moments during which his sleeping presence was insisted on sense prevailed and he went, allowed would probably be a more appropriate word, to lie down. My need for respite probably took no more than five minutes, the rest of the time was a form-filling exercise during which not only were my husband's needs listed, which seemed reasonable, but, our home was inspected for risks, none, I was required to show where cleaning materials, drugs not in use, including over-the-counter drugs, etc. were stored, and I now have to wait for a decision although I understood that I would get the service.

In retrospect it was quite amusing but this is not what I believe that an assessment of a carer's needs should be and had I known what it entailed I probably would not have engaged in it, in some ways it felt very intrusive and I felt as though I was being subjected to a health and safety inspection. And now, despite the fact that I ticked the boxes denying access to the information held being shared with other nonstatutory agencies and the NHS for statistical purposes, where I store the loo cleaner and the fact that our cats are not friendly is held on record and can be shared with just about everyone else .

We have a long way to go before our needs and rights are acknowledged and respected, whatever the legislation states procedures and attitudes do need to change because our needs are still subservient to the needs of the people we care for and the needs of agencies providing services.

[charles47]

I don't know what it was, Parsifal, but it doesn't sound like any sort of Carers Assessment to me.

Did they tell you your rights as a carer (statutory duty to do so under the Carers [Equal Opportunities] Act 2004)? Did they ask about your health and your capacity to provide care (all carers' legislation since 1995, various other Acts since 1986)? Did they ask about emergency cover if your health deteriorates (Carers [Equal Opportunities] Act 2004)? Did they ask about your wishes to have access to leisure and education, or work(Carers [Equal Opportunities] Act 2004)? If not then it was not a proper Carers Assessment and you need to ask for those points to be covered.

[Jess]

Thanks for the replies and It's really interesting to set up this discussion as I think it's a real issue and needs addressing.

Lazydaisey said, in an earlier reply, she'd changed care provider after problems with medical care for her son....We have had to do the same and the experience has left its mark. We are now very cynical and also ready to complain very quickly and very loudly, and write letters. We've always liked the idea of 'partners in care' and over the years we've met a few medics who believe in their own devine interventions instead.

Anyway, we are well on the way to achieving a good setup now, but we are still very reticent about having too many changes at once and letting people get involved and pass round information that is to do with their agenda not ours. Now we are slowly changing all the services we use until we get exactly what we think will be best for our child. We just want to do it in our own way and our own time without interference.

In retrospect it was quite amusing but this is not what I believe that an assessment of a carer's needs should be and had I known what it entailed I probably would not have engaged in it, in some ways it felt very intrusive and I felt as though I was being subjected to a health and safety inspection. And now, despite the fact that I ticked the boxes denying access to the information held being shared with other nonstatutory agencies and the NHS for statistical purposes, where I store the loo cleaner and the fact that our cats are not friendly is held on record and can be shared with just about everyone else .

Yes Parsifal, totally agree with you, thanks for the warning. Although I hadn't thought of those sort of issues in quite that depth, this is just the sort of thing we want to avoid. We have put aside a locked room for the purpose of safe storage, but we still have all kind of medicines and medical equipment sitting around, a dog, trampoline without a safety net and so on, and we choose to leave the bleach where a child might reach it as we expect them to be aware of safety issues like this at their age (obviously we'd put it all out of reach of a smaller child etc) but otherwise we do not choose to meet H&S standards. I'm surprised this was part of a carer assessment and think their emphasis on this was probably mistaken.

Right now I'll wait and see what they say when they write to me. Actually, they were really nice and trying to be helpful, so depending on what they say I might ask them to do an assessment of my son's care needs anyway at some point, but not if they insist on it as part of the carer assessment, and probably not at home.

Perhaps I'm just being difficult, but we dislike intrusions into our private lives, won't tolerate being pushed into things we don't want to do if there is no good reason, and hate interference from people who don't know what they are doing. I also dislike record sharing and have asked the GP that our medical records do not go onto the spine. I can see Parsifals point about the demeanour of the cats now being a matter of official record !!! But that's getting very political and probably this is the wrong forum.

Many thanks again, BW Jess