I am feeling quite anxious about this meeting tomorrow. I have printed out the forms and also the PSPAssociation support forms for this but I am anxious about it all as I know so many of you have had appeal. I work virtually full time and am on my own with two lovely boys. My Dad cares for my Mum with CBD full time and we are meeting tomorrow as the time has come for us to get extra help. We cant do it all on our own.
If anyone has any helpful tips it would be very much appreciated!
Tell it how it is, straight from your heart! Cry and show emotions, don't be afraid of this!! Explain everything as in worst case scenario!! Stress how you simply MUST have the help now as your Dad CANNOT manage alone! Push, push, push!! Good luck! Let us know how it goes x
First don't panic!!! Make sure you tell everything as the worst possible day. Think how your Mum would cope for 24 hours without help. Tell any tales that show that your Mum needs care, no matter how painful. I told them that Steve went to the medicine cabinet and couldn't remember if he took any pills. Made it seem if it was regular, if I ever went out, even though it was only once. Make sure you keep talking about your Mums illness and that it is a progressive illness. Keep saying about her being predictably unpredictable.
Always remember that CHC funding works out cheaper than them having to put your Mum into a nursing home. It is for people who need care due to an illness, not old age, even if they are of that age.
Good luck your mum is wearing herself out she needs help, I have been there it is so hard, agree with what everyone is saying, think about the worse day ever and a bit more. Yvonne xx.
Hi I'm probably too late to post and hopefully all goes well but I now work in a hospital alongside the nurse assessors for CHC if there's any information you need I may be able to help. Best wishes xx
I am finding it really hard to understand why people are literally having to beg for this CHC funding . Sitting in front of a panel having to cry and belittle themselves. This is really putting me off asking for it.
Focus on getting the required high hits, cognition is the one, also whenever you are explaining the care given highlight all the time the assessing aspect that is what they are looking for.
I started our assessment by asking them what they knew about PSP, I also gave them a professional pack if you have not got a spare tell them to contact association to get one.
You should be fine, I found not being emotional helped me to focus but we are all different, there should be present another health or social care rep ideally should be the one who did original referral.
I left Rog in bed he slept through the whole thing!
You will be fine, spit in their coffee!!!!!!!
Julie x
Hi all
Thank you for all your replies it was really helpful!. I took along a copy of the DST domains and the PSP Information document which helps to clarify what needs to go in what domain and things to remember to say. The PSP document was a tremendous help. My Mum was not deemed Severe in any but she was High or Moderate in a significant number of other domains. I really couldn't tell what the assessor's outcome is going to be she was quite guarded in what she was saying. She was also keen to go to a Low or No Need in areas where I thought Moderate.
We didn't have another professional there as the Specialist Nurse is on holiday (she did the Checklist) and Social Services rang me to say they are too busy and they don't know my Mum anyway (Me Dad and my Sister currently do all the care). Mums GP too busy too. The meeting went on for 3 hours and I am totally exhausted.
We now have to write a daily diary for 2 weeks to show what life is like caring for my Mum as additional evidence. The assessor is writing to the Multi Disciplinary Team to request an up to date as report as well. She photocopied some of the letters we have from, for example, botox neurologist, Physio etc.
We will send off the diary in 2 weeks time. Does anyone know how long this all takes?
I am so glad I have this forum to offload and share. It is amazing how much support there is here for each other. Thank you!
Thanks Kevin for replying I think we are in a similar position.
Mx
As an aside after I wrote the above reply to you all, I broke down emotionally. It was a very harrowing experience to express how my lovely Mother actually is now. To put into words and in the right way to a stranger in our home was very emotionally difficult and challenging. This stranger does not know CBD and is only an assessor with her pen in hand and file to record notes. Her facial expression gave nothing away so it is like you are describing the most traumatic experience of your life to a brick wall.
When I wrote the above reply I was still in the realm of 'I have got to hold things together'. Afterwards I fell apart and I have had to take time off work today to recover. No one other than those of us in this dreadful position can know what it is like to go through this.
All I want is some nursing care for my lovely Mum at home. Why does it have to be so difficult?
I regularly think of saying to assessors that his is the equivalent of a job interview,. here no job equates to immense hardship.
They don't seem to get it.
I have been there, immobilised by the distress of this CHC on top of the caring work and the incremental loss of my lovely Liz.
It's crushing!
I get by by fighting when I have to and shutting that off when there is nothing to be done... that waiting and not knowing.
Please come back to me if you need to... I will point you in the right directions so hat you can give a good fight on this... if you don't get CHC.
The assessment is meant to be a joint effort with you... not a poker faced assessor.
While its fresh just scribble a few notes about what happened and key points of what you disagreed with and what you did not like. This is crucial if you need to appeal... and I can help with that.
Many of us go through this... it nearly finished me.
We are in a weird parallel universe here. Apparently Liz did not qualify back in October... But they never said so and still provide care on CHC... The whole thing is a mess.
Being refused is not the end of it... They are required to respond in 28 days (I think... too late tonight to check the regulations)... Give it a week and I will give you a little trick to move things along.
Thanks Kevin we now have to write a daily diary of what life is like caring for my Mother, as if we don't have enough to do! I have tried to create a daily template as things like medications are routine. This is easily done with a tick list periodically throughout the day. Also meal times I have added whether or not my Mum got through the meal without choking. It goes on and on...We have to do this for 2 weeks and then email the diary across to the assessor. Meanwhile the assessor is asking neurorehab team for reports and her GP for all correspondence from neurologist etc. This then provides the evidence for a yes or no recommendation. Did you go through all this too Kevin?
No, they never asked for that. That is what the DST interview is for... But it is another chance to give evidense.
Don't forget things like
Checking for changes in symptoms and following up with GP / Neurology if necessary... even if it has never been necessary!
Checking for urinary tract infections... strong smell and discomfort
Checking that there are enough meds and ordering them
Checking for developing bed sores starting a red patches.
Monitoring passing urine and emptying bowels.
Assisting with eating?
Helping with moving and transfers
Toileting
There is probably more... These are the things we all do and treat as normal... but the above list is just about all nursing care not social care.
Think back to any phone calls over the last month you have had to make and the assessments you have fronted up.
Do not play by their 'one week' snapshot rules - make it a month of evidence by bringing key events forward (even two months if you want) add in crises including your own as a carer trying to cope.
They will have to accept this as evidence... a one week snapshot is rubbish and they do not dictate the rules on clinical evidence, for that be sure.
(You do not need specific dates BTW if you go further back).
Be sure to lay it on about crises.
Sorry this is a fast response ( a lot going on here at the moment - nothing bad)... feel free to come back and ask me to clarify.
She has unwittingly (?) given you another bite of the apple.
Kevin you are fantastic in giving the right advice thank you so much! I will put what we do without thinking daily into our daily diary. Hope you are ok and yes we are in a parallel universe!
Do add another part - any major issues over the last month. One week is very short and the way clinical evidence works is that they will have to include that in their assessment too.
Their assessment is such that everything you do has to be considered as needs as if you were not there... So listing all of the things you have to do count as needs to be met... as if you are not there.
Thanks Kevin I am going to work again on the diary today and put in all the things you have suggested. I just wish this wasn't so hard, its such an uphill constant battle. My Mum keeps breaking down and I do too. I least it is a sunny warm day, hope you have a good day!
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