Yesterday was a traumatic day to say the least. I had been trying to find out when one of my hospital appointments was for the last three weeks. Steve chased yesterday morning at 9.05 am and was told it was at 10.45 that day. Needless to say it was a rush to get me ready to go. We got there to discover the Professor was running over 2 hours late and had not even arrived yet!!!
So we were advised to go and get a cuppa. Just trying to work out where to go as there is very little wheelchair accommodation in the tea area when I was asked to go for an x-ray. This I duly did and then was advised again to go and get a drink and something to eat. By the time we had had something to eat and drink it was gone 1pm. So we returned the clinic area. Eventually we were called in and the registrar saw me and said he was going to get the Professor to review me. After waiting over 45 minutes the registrar returned without the professor and said "your condition has not changed therefore we will see you again in twelve months".
The last time they saw me I was walking the corridor with sticks this time I was in a wheelchair so hence my condition had changed.
I asked about the other symptoms I was having in the hope that I was going to get referred to someone. I just got told it was not his department and that I was to go home and if the symptoms reoccurred I was to call for an ambulance by 999.
I therefore telephoned my GP today and told him the outcome of the appointment of yesterday and he said "I am not sure who to refer you to but leave it with me I will do some research and you will be referred to the correct specialist".
As my husband is now my full time carer and had applied for Carers Allowance last week he received a letter by post this morning saying his Job Seekers Money would be going into a bank account which is now closed so he telephoned them to let them know this. The DWP then asked him why he had not been to sign on at 10.30 am. He explained he is now applying for Carers Allowance and they told him to get to the job centre in Madley for 11.30 am. We arrived there and after waiting a while we were eventually called. The gentleman behind the desk enquired why he had not filled in his diary of looking for work when I explained he was applying for carers allowance and the reasons why this had not happened before last week due to the fact that the letter had arrived a week ago Saturday explaining my care level had gone from low to middle rate from the DLA and that he was only entitled to apply for Carers Allowance as of last Monday and the form arrived last Tuesday that was why he had not filled in his "diary".
When I explained that the letter stated that my care level had gone up as of the 9th January but we had applied on the 6th January and that it had taken over 3 months to be informed that the care level had gone up the staff looked stunned but agreed the system was not brilliant for the genuine claimants.
Now my husband is applying for Carers Allowance he cannot claim JobSeeekers on top we understood this and hence that was the reason we thought he did not have to go and sign on today.
Once Carers Allowance is agreed and we are notified by letter than we can claim Income Support. I enquired how long this would take to happen response 3 -4 weeks. I said "you know that someone is entitled to a certain benefit and yet they can't apply for it until another comes into force by letter, what are they meant to do in the meantime?"
Well depending on the circumstances we can back date certain things. I then said they could not back the Carers Allowance as my husband had earned in excess of an average of £95 per week and hence the claim had had to commence from that date. The gentleman dealing with us looked stunned.
I then asked if we could claim Income Support as of now and was informed "NO".
This is why people like us just want to give up on life.
I throw myself into helping others and doing various things to keep busy otherwise I would go around the twist. My medication is not helping me with thinking and writing and I am finding everything a struggle.
When you meet me on Saturday if I have a lapse of concentration it is not that I am not paying attention or not listening to anyone it is the medication making me like this. I then get frustrated and frequently have to ask what was I talking about.
Bless my husband he is so caring and wonderful about it all. Today I have had to borrow his hanky three times so far to wipe my tears of anxiety away.
On the good side though so far I have gained four raffle prizes for Cancer Research Relay for Life event in September and have several addresses to write to so that we can gain some more donations.
So I am feeling a lot more positive about things now.
The sun is shining and I am going to venture out again this afternoon.