First post – An introduction

Welcome to my blog, this first post is to introduce myself and give some general background of why I started the blog.

I am 35 years old and have Duchenne Muscular Dystrophy, I have been receiving care in my own home funded by the Continuing Health Care (CHC)  department of my local PCT, CHC pay a care agency, lets call them AN, who provide trained carers and nurses to come into my home to give me personal and other care.

The care package I was receiving had to be increased last September due to my main carer, my Mother, having to go into hospital for a foot operation, Ms. B from CHC along with my community nurse carried out a standard assessment and it was decided that I would need 24 hour care for several months, and after that I would need a higher care package than I had received in the past.

There were a couple of disagreements regarding how I would be cared for between me and Ms. B, but the care agency AN sorted things out so they could give me the level of care I needed.

The whole situation was running smoothly until it was time for a review in December, Ms. B discovered that my care package was not the original one she had set up (although it’s pretty much a certainty she had known this for some time), now the new care package had been suggested by AN and agreed by me, AN also claim they had checked with CHC regarding the changes and I have no reason to believe they didn’t, but Ms. B was not happy and after a telephone conversation accusing my Mother of changing the package, she decided to drop the registered nurses who came in at night.

After she notified me of the decision I challenged it and formally asked for an appeal, Ms. B ignored my concerns and changed my care package without my agreement.  Following this I sent several emails to Ms. B saying I was not happy with the changes and quoting sections from the National Framework for Continuing Health Care which stated she could not behave in this way, things escalated with me eventually asking for her managers name or someone else in authority who could help me, her reply was a very short email saying that I should talk to my community nurse instead of her.

Shortly afterwards I had a meeting with my respiratory nurse, we discussed the issues and she suggested we have a case conference, after she left she talked to CHC and I was sent an email from Ms. B’s manager, Ms. D,  saying we needed a case conference and that registered nurses had been reinstated immediately for two nights a week in addition to my current 24/7 carer cover until the case conference.

The meeting is due on this Tuesday, we have been waiting since the beginning of February, I have prepared my case as well as possible and am sure that the law and NHS guidelines are on my side, but I’m not overly confident I will get the care package I need, we’ll see.

This is just a summary of what has occurred and there is much more I intend to write in future posts about this period, but until Tuesday I will be busy with last minute preparations, expect my next post Tuesday or Wednesday.

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