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Monday 24 Sep 2018
Carers & Respite PDF Print E-mail
Written by Sally Fletcher   
Saturday, 02 May 2009 14:16

Help and Respite

Since Ben was a few months old I have been seeking help to look after him, not because I want help in raising my children but because I had to recognise I needed it.  This is our experience.

Direct payments

Direct Payments http://www.dh.gov.uk/en/SocialCare/Socialcarereform/Personalisation/Directpayments/index.htm

We heard about Direct Payments in early 2004 from my sister in law who is a nurse working in Wales.  We had asked social services if any help was available but had been told three times that there wasn't any.

We did some searching online and found that we were legally entitled to an assessment. So with nothing to looses we asked for one.  At the time the direct payments scheme was quite new to Norfolk and our early attempts to get an assessment or even get someone to respond to our phone calls was frustratingly slow.

Eventually I found out that the person who had been sent out to assess us was not a social worker at all.  Finally when these things were ironed out Ben was given Direct Payments.

We opted to receive help with staff advertising, contracts and payroll from Independent Living Norfolk part of Norfolk coalition of disabled people http://www.ncodp.org.uk/iln this meant that I had to fill in a time sheet every four weeks and send it in to them and they arranged to pay our staff's wages.

Over the next four years Ben's level of Direct Payments went up and down with his assessed need.  We did receive an increase in help when Ben's sister Harriet was born but it was cut when the baby was a couple of months old. I could not cope, at the time Ben was still reliant on being bottle fed every two hours and the new baby who was premature fed every two hours day and night, I couldn't keep up with the feeding let alone any of the children's other needs.

After my requests for help were turned down I made an official complaint and we were reassessed. For the next three years Ben mostly received 36 hours per week Direct Payments.  This may sound like a lot of hours but it made up four days care a week which just allowed my husband to go to work and me to feed and care for the children we didn't actually have any "respite".

[Dad Says; During the assessments for Direct Payments they pry into all aspects, the level of scrutiny and invasion into your private life I consider unacceptable. During one of the request reviews they tried to use against us the fact that I cut the hedge every few months and mowed the lawn every week! Even any hobbies (should we have had any time to do them!) were analysed, and it didn't appear to be for our benefit.]

The good thing for us about Direct Payments was that we could choose our own staff and the times when it was most helpful to have care support, we were also able to employ Ben's Grandmother as part of his care team.  The difficult thing for me was that I felt I had become Ben's care manager instead of his Mum.

We had to have six monthly review meetings with social services to continue to assess our needs, I understand that this is necessary but I felt that in the meetings I was spoken to as if I were a bad parent and I often thought that decisions had been made before the meeting and it didn't really matter what I said we were just going through the formalities.

As well as our social worker these meetings for us were also with her manager and usually the home based nursing team manager, I felt unnecessarily ganged up on, sometimes they even spoke between themselves as if we weren't even there.

[Dad says; I work in a very tough environment and regularly partake in commercial/legal negotiations and therefore am used to high pressure meetings, however whilst the meetings with the social services was very formal and organised, even I found that what I said was ignored and often talked over. This was not the case in all meetings at it did depend upon the particular social workers present, one in particular went out on a limb to ensure he made a proper assessment and as a result we were given significantly more help. I am grateful to this chap as there was always a well reasoned response (even if it wasn't what we wanted to hear) with constructive advice.]

Often our hours were reduced even in times of extra need such as when I became pregnant with my third child, whenever this happened Ben's medical professionals would write to social services in support of our case and ask them to think again.

They did but there was always a delay between the hours being cut and re-instated when need increased in which we had to struggle and I felt I could not cope, often becoming quite ill myself.

I felt like I was only just keeping my head above the water all the time and every so often they would let me slip back under.

My personal opinion is that Direct Payments is ok for a little respite or a little bit of support, but when you are trying to run an essential care package there is not enough security or professional support for the service user.

Home Based Respite

Home Based Respite Nurse

From the time I was pregnant with Harriet my second child we were offered homecare from the Home Based Respite team from Upton Road Children's Centre in addition to our direct payments.

From the time Harriet was four months old and our direct payments were increased our Home Based Nursing hours were eight a week to make one days care.  The problem was that the scheme did not always have the staff available to fill the hours.

I think this is a good scheme for people using it as actual respite which I think is what it's designed for, but because I was using it provide necessary support to allow my husband to go to work if the care staff were not available we were stuck and lost our care hours.


Homecare http://www.norfolk.gov.uk/consumption/idcplg?IdcService=SS_GET_PAGE&ssDocName=NCC006956&ssSourceNodeId=&ssTargetNodeId=209

When Harriet was a baby and I was recovering from my caesarean for a few weeks until I was able to lift Ben social services Homecare staff came into the house for one hour in the morning and one hour in the afternoon.

This filled the gap between my husband going to work in the morning and our direct payments carer arriving for our usual days care.  The carers provided were very nice.

When I was due to have my third baby and another planned caesarean the Homecare service did not have any staff available to assist in the same way so they arranged for us to have a direct payment to increase the hours of our usual direct payments staff for a short period.


Quiddenham Hospice


We made contact with Quiddenham Hospice when Ben was two years old.  Ben is very sensitive to where he is and he did not settle when he tried sleeping at the hospice so instead we chose to use their homecare service.

We were assessed and care is offered to us each year.  Usually once a fortnight a nurse will come out to our home and care for Ben for up to five hours.  Usually Adrian and I use this time to catch up on some shopping and four times a year we go out for an evening.

The hospice offers many services to families and we have been pleased to join them for special outings and parties.

Although Ben was unable to settle whilst staying at the hospice I know many families who find this service works very well.

Hospital respite

James Paget Hospital / Hospital respite

When Ben was a baby our then local hospital James Paget did run a home respite scheme staffed by their nurses, but when we asked for help no staff were actually willing to work the overtime necessary to provide us with help so we had none.

Continuing Care

NHS Continuing Care


The idea of Ben being assessed for Continuing Care was raised when he was five years old.  At the time I was not keen on the scheme because I had been told that Ben would be looked after by a large team of nurses and I felt that they would not know him well enough to look after him safely.

From my experience I do not leave anyone alone with Ben who has not spent at least two days a week with him for several months however well qualified they are, I know that in Ben's case this would be unkind and unsafe.

Happily this has not been the case and Ben received continuing care status in late 2008.  The team have been working towards arranging a care package for Ben using Ben's own carers who had been providing his care under the direct payments scheme.

At first I felt very positive and it is much better having all our care funding from only one place, however some aspects have proven to be the same old up hill battle trying to arrange a normal life when our life isn't normal through professional people who can't really imagin what it's like for us.

I hope that now Ben is aged six and he has a brother and sister we are moving on to a new happier chapter in our lives enabled by encouraging the understanding and support of our professionals and hopefully Ben's care needs being as near met as possible within the systems currently available to us whilst battling on to improve it.

This experience has been another lesson to me in that when I am told something and I do not feel it is right it is always worth questioning it and seeking advice from a higher authority within the service in question.

In other words if something is not in your child's best interest, never accept it even if a professional voice is telling you there is no other option, there always is you just have to keep fighting to find it.





Last Updated on Tuesday, 09 February 2010 07:14