HELP! Carer assessment tomorrow morning....

[Jess]

Hello everyone!

Please can anyone one advise me???? I asked for a carer assessment to help with my son's medications when I'm at work. I'm pt and I only have to go in to the office one or at most two days a week when I have teaching to do. As I'm a lecturer I can manage most of the rest from home (by internet/email etc) apart from the odd meeting. My partner works from home when I go in to work and we basically share our childs care. However I have a few problems....and wondered if any of you could advise me what to do, expect etc...

The biggest problem is that every three months my son has 2-3 weeks where he's on intravenous antibiotics (IV's). He has these every eight hours and it takes about one and a half hours each time. I get up early and do the first and can usually get to work on time, and of course the last is at 11pm, so I'm home then. My partner has not learned how to do the IV's and although he's willing and able to do just about everything else, he's not really qualified to do them whereas I am an ex-nurse so I don't have a problem.

What I can't do is get home from work to do the middle dose at about 3pm. The community nurse was a bit reluctant to agree to helping out as 'it takes a long time' and she's busy. I was hoping the assessment would enable me to insist someone qualified comes over to do the middle lot of IV's on the days I have to be at work. The IV's don't fall into convenient times like holidays and can total as much as 12 weeks a year, so I can't just not turn up at work, or I'll not be able to do my job. My employers can't be faulted and are very supportive as are my colleagues, but basically I just want to go to work and do my job.

So I asked for the assessment to enable me to work and still be sure essential medicines are given while I'm out. I don't get carer allowance because of my earnings and can't really afford to leave my job, also it's a career that I enjoy and keeps me sane.

The woman who was going to do the assessment said she wanted to meet my son, and I said no, as he has enough people prodding him at the hospital every month and also I don't want him to hear me say things like I want someone else to do his IV's as I want to go to work. I think he'd feel even more guilty about being ill than he does already which is totally unfair. I got the impression she wasn't interested unless she met him as she said she'd have to assess him as well. I said I thought not, as she wasn't medically trained and knew nothing about his his illness or IV medications and was supposed to assess my needs as a carer, not my son.

She wanted to come out to the house, but I made an appointment to see her at her office as I thought she was just a bit too keen to intrude and all I want is to be sure we can rely on a few days a year of specialist peadiatric community nursing support, about which she will probably know very little anyway.

Am I being unreasonable? What should I expect? We have never seen anyone from social services before but she did seem to be a bit of a 'do-gooder' who gave the impression she would know better than me what help I wanted.

Any views welcome, BW, Jess

[Lazydaisy]

When it comes to anything medical, Social Services know NOTHING. Belive me, have learnt through experience.

My son has Downs Syndrome and also insulin dependent diabetes .Social Services assured me that they understood his needs. As an ex-nurse yourself, when i tell you that while he was in repsite care, his blood sugar went down to 1.3, and they sent him to bed, without eating anything, then you will know how much to trust them. Thankfully, my son is a magpie,and had pinched food throughout the day, so he did not go into a coma.

Ask your GP for some support, as you should be able to access a community nurse through your surgery.

I have now started asking for appointments away from our home. it is our castle, and I feel invaded, so would much prefer to meet elsewhere, which doesn't seem to be a problem.

Good luck.

[sue31didit]

One of the points you made is essential. It is your right to meet her away from the home and discuss things that you do not want your caree to hear. It is YOU assessment of needs and a time to be honest and look at things.

I had the same problem. I meet my assessment officer at her office, for the same reasons as you, I didn't want some things being said by me that my hubby could misunderstand and make him feel like a burden or at the least a problem for me to cope with, its hard enough for them and us without anyone feeling guilty for something that no one is at blame for right?

You are not being unreasonable in any of your requirements and I would sit and say exactly what your looking for. As for it 'taking a long time' isn't that what they are there for?

Best of luck I have had problems with mine in knowing what it was I needed etc and beyond their capabilities as I am disabled myself looking after someone who is disabled both an affliction phychosis at times and physically.

I am sure if you lead and know your own mind, you can get to a compromise.

let us know how you get on

[Guest]

Correct me if I have misunderstood your post but I envisage a couple of problems here. If I understand your post correctly it requires someone qualified to administer IV antibiotics, other obviously than a trained family member, this would be my normal understanding of the administration of drugs via this route, and although social care workers will administer oral medications I think that social services will argue that this is a health-related need rather than a social care related need and that the staff employed do not have the qualifications to provide the service and therefore it should be handled by the NHS rather than the LA. The other problem is that the primary need to be met is your son's, i.e. the need to have the drugs administered rather than your need for respite in order to work. One way round the problem might be for the community nurse to administer the antibiotic, i.e. set it up, and a social care worker to stay with your son whilst it goes through, I am assuming that it is delivered by drip.

Carers assessments are very much predicated on your specific needs as a carer rather than the needs of the person who you care for, for example your need to have a sitter so that you can work or have some leisure time away from the person you care for, it sounds as though you need two assessments, one for you to address your need to have someone to be with your son in order for you to work and one for your son in order to assess his level of care need as this is beyond a simple sitting service or the administration of oral medication which would be a normal social care function whilst providing a sitting service.

In your situation I would go ahead with the assessment away from the family home and see whether what you are looking for is going to be possible but my instinct based on experience of the dividing line between social care and NHS care as defined by LAs and apparently legislation is to suggest that you should be pressing your local health service to provide what very much looks like a health service responsibility. Other people may have other experiences and ideas which may be more valid than mine.

Annie

[Jess]

Hi Sue and Lazydaisey,

Thankyou so much for those comments. I thought I was over-reacting and I can now see I'm not the only one to feel like this. I'll stick to my guns and insist on only seeing her at her office, without my son, and see how it goes.

You are right, I don't want to feel invaded, and I don't actually want any support or help from her except to access other services. I don't want my son to be involved, he saw six different professionals at clinic only yesterday, he dosn't need someone else coming into our house who isn't even involved in looking after him. I also get very bored explaining my situation to people who don't need to know, it's a waste of what free time I do have.

I'll keep you posted.

BW, Jess

[Jess]

Hi Annie!

Many thanks for you reply, you are probably right it's the health service who needs to sort something out, they don't seem to stretch to guranteed home visits on the few days I need them. We don't need a sitting service as my partner, my sons dad can do that, he works at home on my work days, and my son will probably be at school most of the day anyway. There's always one of us just around the corner in case we need to collect him from school.

When he has the IV's it's too complicated to set up and then leave to some sitter, it goes into an indwelling device straight into a vein in his neck. There are five lots of changes, a flush, a pump antibiotic, another flush, another syringe full or pump of another antibiotic and then another flush and heparin to keep his line open. Wouldn't let social services near it. Needs a trained pediatric nurse who also knows about possible drug reactions etc.

We just want to know that I can plan a days work, and IV treatment, in advance, and that someone will do the middle dose on only about a dozen ocassions a year. They mainly offer us services we don't want at times we don't need them, thats the problem.

I thought carers were now supposed to be supported to go to work....... or will I have to lose my job first I wonder???? I asked the Princess Royal Trust and they said that an assessment of my need to work can enable them to require this support so that I can go to work. Last time I spoke to the nurse she suggested I missed the dose out instead, which obviously would drop the AB levels in his blood and not be a very good thing to do.

I guess I'll just go through the process and see what happens. It's interesting that you also say see them away from home. The woman sounded suspicious when I said that, like there was a problem I was trying to hide, or maybe I just read that into what she said. One of my best mates is an ex-social worker and she said avoid them whenever you can.

Thanks again, Best wishes, Jess

[Guest]

This is most definitely, in my view, a need which should be and can only be met by the NHS not social services and in your situation I would be concentrating my efforts on getting the NHS to provide it, sometimes taking a problem accessing services to the next level of management can be, in my experience, effective.

[Lazydaisy]

Jess, It is shocking that it has been suggested to you that the middle dose can be missed, but it is not surprising. Again, our son's Diabetes caused problems with lunchtime injection, and our GP said that he should be on twice daily instead of the normal three to four times daily that people with diabetes have nowadays. It caused endless problems, not least because two others in the family were on the other regime, so our son with Downs became very confused, and diabetes very unstable. It took a lot of work, and we moved his care to a more proficient provider. His Diabetes care is now excellent.

I do wish I had been on here though, two years ago, as Annie's advice would have been invaluable, I think.It was difficult to know where to turn.

[Jess]

Hi Annie and Lazydaisey!

I've had a few run-in's over medical care over the last couple of years and changed services and it's made an unbelievable difference, which has given me the confidence to pursue what I think is the right course of action. It's local services that seem a bit thin at the moment and I guess it's just about slowly going through all the different processes until we get the support we need guaranteed, or it's clear that we won't get it - and then we complain. I've found that being positive, asking for help etc is often useless and writing letters of complaint is often the only recourse.

Lazydaisey, sorry to see how sadly lacking the care your son has been given is, hard to believe until you have witnessed things like this first hand.

Really appreciate your advice and support, thanks again, wish me luck tomorrow.

BW Jess

[sue31didit]

It is right though, the carers assessment is to meet any needs for you to cope and not for the help for your sons meds........but, I don't think its any harm in bringing it up. As for her to be suspicious I was given the option to meet at my home or anywhere else if I didn't want to discuss things in front of my caree.

I think you need a community nurse, that would be my guess and that would stop at the GP for help, but I could be wrong.