Uphill struggle

After last weeks blog I am hoping that the purpose of my blog is becoming clear. I have never had to deal with so many agencies and jump through so many hoops in my life to get somewhere, the whole process, not just of coping with my Mum's illness, but getting her the help she needed has been such a steep learning curve. Adult social care , social workers, local authority finance teams, care agencies the list is endless. All of this has been so difficult to navigate. I consider myself to have reasonable common sense and logical thinking ( some may disagree !!)  but nothing has been easy to work through and the hurdles that have had to be jumped have been so high. Information isn't passed from care giver or agency to another care giver , you feel like a stuck record saying the same thing over and over.  No one wants to tell you how to get help or how to access services they just want to pass your case on or in many cases just tick the boxes and sign it off , regardless of wether the person involved has got the care they need. This is not acceptable in my mind.  I hate to see people neglected and not treated as individuals - I understand all too well how stretched the system is but I won't allow this to be an excuse for allowing the care or services  my mum receives to fall below the standard that I consider to be acceptable and more importantly safe. The only aspect of the process that took place in a timely manner was Mum's financial assessment. The cogs can turn very slowly if you want to access services but speed up when the cost of those services needs to be paid for. I hope that my blog can empower others who are trying to navigate the system , to give people the pointers to get the help that they need and deserve , as my experience with the CHC proved they were not prepared to assess my mum correctly and that wasn't acceptable, many people probably don't even realise they can be involved in the assessment process and more importantly can challenge the process - I didn't and my Mum had two failed assessments that I was unaware of. No one should be denied the care they deserve and I am passionate about this. Most of those needing to  accessing these services now were the original people who were promised to be cared for from the cradle to the grave by the creation of the welfare state in the 1940s. I just hope that reading my blog can help others to achieve the results their loved ones deserve. Watching my Mum slip further and further away is horrible but I am confident that my persevierence  is ensuring she gets the care she needs which is some small comfort in all this , I can look back on things in years to come and know I stood up for my mum and I worked hard to ensure she wasn't neglected or ignored. I have learnt some hard lessons so far on this journey and I have used these to shape future decisions, Mum being admitted to hospital is now very unlikely because in the absence of a life or death situation I cannot allow her to go in hospital. This view is shaped by her previous neglect while in hospital and the more I talk to people the more I realise her experience isn't unusual and this is so sad. People like my Mum don't have the capacity to speak out and we must be prepared to highlight issues that affect our loved ones in the hope that one day we can have a social care system for people that is safe and effective.

Today's the Day !

So the day of the CHC panel meting finally arrived, I was nervous and didn't sleep much the night before, insomnia is always my weakness when I have anything on my mind. I knew the meeting would be sometime in the morning so I wasn't expecting to hear anything from them until late afternoon or maybe the next day. As it was a Wednesday and I wasn't working I visited Mum as usual late morning so I could help her with her lunch. Just as Mum was finishing her lunch I received the call from the CHC team. Nerves were on edge when I answered the phone, it was nurse who had initially assessed Mum and who I had disagreed with from the outset. She cut straight to it - Mum had been successful - the panel accepted that she was eligible for fully funded care due to her complex medical and physical requirements - I was so pleased I could have cried. I felt that my fight had been vindicated - I was right to have stood up to the CHC team and battled to get Mum's needs assessed properly. No further supporting evidence was needed to assist them making their decision , the information that had finally been gathered on mum's condition was enough. What she told me next was even more startling , the funding was also to back dated six months from the initial assessment date, the evidence highlighted Mum's declining state and it could be traced back a further six months. This was not expected at all , I was elated to have secured full funding for my Mum via CHC but to then find out she was getting this backdated too was just wonderful. I felt so proud of what I had achieved for my Mum , I had secured her the funding to provide suitable care for her and this was a huge victory. My pleasure could have easily turned to anger though when I reflected on the whole process , if I had just accepted the initial assessors findings Mum's case would not have even received a review  and certainly would not have been presented to the funding panel for consideration. This was a difficult thing for me to process , we had been lucky that I had been prepared to challenge the initial assessment and that I had been vocal in my disagreement with them, how many other cases are dismissed at this initial stage ? how many of them really should not be dismissed but actually assessed in much more depth ? what about those people in Mum's condition who have no one to stand and fight for them ? I suspect there is a huge majority of CHC assessments that never make it to a funding panel review.  Some of these cases I accept shouldn't go to the panel as the evidence isn't there to support the funding but how many cases don't make it because the evidence isn't looked for or accurately recorded ? There was never any doubt in my mind that my Mum was eligible for funding it was an obvious given - but should I really have had to fight so hard to achieve this, should I really have had to point the assessor in the right direction about Mum's condition ? - The answer is no ! I think that the initial assessment was skewed in a direction that supports the failure of many cases to get considered by the funding panels and this is wrong. My experience shows this. I had been successful in my challenge but I did feel upset that the process had been so difficult and if I had just accepted that initial assessment nothing would have gone any further and Mum would have been denied the vital finding that she was eligible for. Anyone reading this blog with loved ones in care should make themselves familiar with CHC and what it is, it can be such a vital source of funding in peoples darkest times. If this blog helps one other person to receive funding that they are eligible for the Blog will have served it purpose.

CHC assessment round 2

So after waiting patiently for several weeks I received a call to meet with the CHC assessor and the chair of the CHC board. I was nervous about this as you would expect but I had been diligently compiling evidence myself over the weeks and documenting everything of relevance. Mum was still in bed with the pressure ulcer and despite the initial assessment concluding the pressure ulcer was healing this had proved not to be the case. Mum was now unable to feed herself which was something that had been brushed over by the assessor at our initial meeting, this without doubt is a significant change in her circumstances as it makes her care needs much greater. After I had given Mum her lunch I met with the CHC team. The atmosphere wasn't overly cordial as I had questioned the motives of the assessor in my complaint letter and here we were face to face again. The bigger picture was what I decided to focus on I wasn't there to make friends or back track I was there to get Mum's condition and complex care needs recognised. The Chair took control of the meeting and went through all the evidence that had been gathered in light of my letter and extra information that I supplied - over and above that documented by the assessor. We discussed the assessment sheet in detail and lots appeared o have changes since the initial brief assessment.  We discussed the pressure ulcer and it transpired that on the day of the assessment it hadn't actually been assessed so rather than check again on the process of the ulcer its presence had been disregarded- this proved to be a major flaw in the document as the ulcer was still present and actually was increasing in size and this should have been followed up on the paperwork. This just backed up all I had said about the assessment process not being fit for purpose and in effect was all I needed to substantiate my feeling about the initial assessment. The upshot of the meeting was that yes my Mum had deteriorated since the last assessment - this was in contrast to the initial findings that she had actually improved ! I was relived but not surprised I knew the initial assessment was flawed and I suspect many cases applying for funding are dismissed at that initial stage - my question now is how many should actually be dismissed ? I suspect this is much less. There were still hurdles to jump though, Mum's case would now be presented to the funding panel who would ultimately make the final decision on funding. This was a small victory in itself though as the initial assessment wasn't even suggesting mum's case went before the panel. I left the meeting drained - I was happy but really felt that I should not have had to put so much effort  in to getting Mum's case this far. The deterioration in mum's condition was significant and obvious and it was bitter sweet fighting to get this recognised. We certainly hadn't won the war but I had fought the first battle and and come out on top and this was something to be proud of. A date was set for the panel review and all I could do now was wait and see what there decision would be.
I suspect many who go down the CHC route are unaware of what the assessment looks at and how it is scored - this information is available on line and I would urge anyone who is going to a loved ones assessment to read up on things before hand. It proved invaluable to me and meant I could actually challenge the assessor on areas that I felt were not being assessed properly. If you don't think the case has been fully assessed than challenge it - yes its daunting but you know your loved one best and you know how they are deteriorating and how their care needs and increasing , don't be pressured by authority , stand up and speak out if you think things are not being taken into account properly. I suspect very few people do this as they don't know how to , I didn't ! Just sit down before the meeting and note what you consider as important factors , refer to the assessment tool and see if these are assessment criteria. After the assessment you are still unhappy put your information and issues and writing and ensure they are followed up.
All I could do now was wait for Mum's panel hearing it would be a nervous few weeks but I was happy I had done all I could to ensure her assessment had been thorough - eventually.