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.

CHC assessment !

So eventually an assessment was arranged for my mum, there was very little flexibility in when they were prepared to come out so I had to again take some time out of work to make sure I was at the assessment. When I arrived at the assessment I was a bit surprised ( understatement ) to find that the nurse from CHC had already done all her assessment before my arrival, that wasn't how I expected the assessment to be carried out and I was interested to hear her thoughts on things. This was the most shocking bit for me - she felt mum was actually better than last year when she assessed her and didn't feel mum's case required any further input ! I was stunned and for a few minutes I felt like I had been winded, I couldn't believe her conclusions and I just didn't know what to say. This wasn't happening and I wasn't going to accept what she was saying to me as I really didn't agree with her, we discussed things and she admitted that she was using Mums notes as evidence even though she was aware they were often inaccurate and not a true reflection - WHAT !!! that's not acceptable if you know your evidence may be flawed you can't rely on it , she wasn't even going to ask for my feelings or thoughts about my Mum , she was just going on evidence she knew to be flawed !! how could this be a thorough and fair assessment ? Mum had a pressure sore at the time of the assessment but she wasn't even going to evidence that as she said an entry in the notes a few days prior had eluded to this improving - she wasn't going to follow up on this at all and this is one of the indicators on the assessment tool. The more I spoke to her the more I could see the purpose of her role was to keep a tight grip on this public money , she even said to me at one point " this is hard earned tax payers money we are dealing with ! " - I was aware of that and I felt her comment was inappropriate and gave an insight into how she percived her role. I was trying to get something for nothing I was trying to get my mum something she deserved and was entitled to, I am not a free loader and neither is my mum and her implications were very hurtful. Unfortunately her comment had made me even more determined to challenge her position and despite her best efforts to make me roll over it was now not going to happen.
I arrived back at work shell shocked and couldn't begin to explain how the meeting had gone to my colleague. I was stunned by the assessors attitude and negativity. I had asked her to clarify several areas of her scoring and I expected her to provide more evidence to back up her findings if she felt they were right. That night I wrote to the chair of the CHC to explain my lack of confidence in the process of assessment that had taken place and to make them aware of my unhappiness before the assessor had time to compile her report , I didn't want then to conclude things after such a sketchy brief assessment and I was going to make sure they didn't just rely on the limited evidence they had. This obviously wasn't going to be an easy process , challenging then isn't what most people do but I wasn't most people and I was becoming more and more determined to get Mum recognised in her struggle.
The assessment disregarded many elements of mums condition as they were deemed part of the disease process , this wouldn't happen with any other chronic condition but it suits the assessment purpose when dealing with dementia to just label things such as withdrawal , being quite or depressed as the disease process without actually gaining evidence to support it. The assessor got Mum to smile so felt mum wasn't suffering from any low mood or depression even though she had lost her husband and was trapped in this horrible illness. That was such a tenuous shallow way of evaluating someone I cannot believe it could stand up to any scrutiny. My complaints detailed fully all the areas of the assessment I was unhappy with and the areas that I wanted assessing further, I was not going to wait for the assessor to draw her conclusions I was making it known immediately that I wasn't happy with the way things had been carried out. I received a reply to my letter stating that my concerns would be looked into and that the further evidence I was requesting would be sought. They also acknowledged several key points about Mums condition that had not even been touched on in the assessment , some of these were significant and of critical value to Mum's case. It was agreed that once the further evidence had been sought the assessor , the chair of CHC and myself would meet again to discuss the case further. I took the chance at this point to also indicate that the pressure ulcer the assessor had felt was not worthy of mentioning was still present and actually not improving as the paperwork suggested , this just added weight to my argument that the assessment had been sketchy and not robust , this may be ok for some people but it wasn't going to be ok with me. Just writing the complaint and detailing my concerns about the assessment helped me to see that I was right , Mum was being treated unfairly by the process and with the detail and evidence I provided it was going to be hard to disregard many issues that the assessor hadn't felt needed to be mentioned but were actually of major importance to how Mum's dementia was impacting on her life.
Standing firm with the assessor had been a hard and demeaning process , she made her comment to me about tax payers money and then even asked if I was an only child, I am , she then said "so the money your Mum pays at present would go to you then if she is awarded funding ?"- this was an attempt to make me feel bad about challenging her but It didn't it just made me more determined to fight for what my Mum deserved, money wasn't the issue , the issue was that because dementia often robs people of their basic instincts and communication processes then its easy to make assumptions about them , the assessor was making many assumptions using what she knew to be flawed evidence. She spent around 10 minutes with my mum and was happy to draw multiple conclusions based up on this , but she wasn't prepared to listen to me or the nursing staff , we are the people who deal with mum day on day , I am the person who knows her best , I am the person who sees how she has declined as she fights this awful illness and it is truly negligent not to take our views and evidence into account when dealing with such complex matters. Knowing that more was now being done and that I was pushing for mum to be assessed properly made me feel slightly better about the process. no time scale was set with regard to meeting the CHC team again as it wasn't possible to put a deadline on the evidence gathering and I was happy to let this take its course, I had nothing to loose now I had made my position clear and I could wait it out , the more evidence that was gathered the more it would strengthen mums case and this was all I could hope for.

New year , New Challenges ?

Christmas was a quiet affair , we all visited Mum in the morning , she was with the other residents in the lounge and they were all receiving Christmas gifts before their Christmas lunch.  To mum it's just a day like any other but I make sure she has gifts and that we spend time with her.  The care home staff were lovely making everything really festive for the residents and making sure they all had a good day.
We spent the rest of Christmas day at home with Neil's parents just a quiet Christmas day spent with the ones who mean the most to us. Just enjoying each others company but without doubt missing one special person - my Dad , it was hard, our first Christmas without him , especially after last Christmas had been so miserable with him suffering so much. People are right when they say life goes on ,because it does ,but some bits of you stay in the past with those who are no longer with us.
When we visited mum on Boxing day she was in bed which was unusual but the Nurse explained she had the start of a pressure sore on her sacrum so rather than having her sitting they were nursing her in bed with regular turns, this was sad to hear but these type of things happen it just a fact. I was happy that skin inspections had picked up in this and that it was being managed.
The rest of the holiday passed in a blur we visited family in Lincoln and then the weather turned and the rest of the break was spent avoiding high winds and lashing rain.
The new year is often quiet for us I have, as I have got older, just wanted to spend it with family or good friends , no big nights out or lavish celebrations. This year was no different we went out for tea then chilled out at home with a movie and fizz - cosy and relaxed.
Once we got back to work I set my mind to finding out more about CHC ( continuing Health care ) and I was surprised by what I read on line. CHC is a huge resource of money but reading forums etc very little is known about what applying for CHC funding involves and what the process is. Not one to be put off I downloaded the on line CHC toolkit and had a good read through it. In my opinion Mum certainly qualified for CHC funding in some way or another and I was surprised she had previously been turned down for it on two occasions. I set about collating evidence about Mum's condition and how it impacted on her care needs and chatted with the staff at Mum's care home. They all thought Mum received CHC funding already and were very surprised she didn't. I read lots and lots of imformation on line and the more I read the more I realised how hard this CHC money was to access and how laborious the process of being awarded it can be. in the words of one on the nurses , "CHC money is only available if you have one foot in the grave ". I was becoming more and more convinced that Mum should qualify for CHC funding and it was difficult to see any good reason why she had been refused it. I contacted CHC and discussed my lack of involvement in the previous assessment - various excuses were rolled out but I wasn't prepared to accept them and they reluctantly agreed that Mum could be reassessed. I was confident about this , since Dad had passed away Mum had certainly deteriorated and I was sure the CHC assessed would be able to see a huge change in Mum's condition. An assessment was booked and I started reading all I could about the CHC process and how other people in my situation had dealt with it. Some of the stories were pretty grim to be fair and in most cases the CHC assessment team don't come out of it well. I found all this information so useful because I knew the right questions to ask and the important points of the asssessment., I knew Mum was certainly fitting a lot of the criteria to receive funding so  I was ready for the CHC assessor and had all my documentation ready . Bring on the assessment.

Accomplishment

Well the marathon came and went - and we both completed it ! The sense of accomplishment was amazing there were tears when I finished and I was just glad I was on my own as I managed to regain my composure before I met up with Rebecca and our friends who had supported on the day. I was elated and I knew my Dad would have been so proud of me ! I felt so close to him as I crossed the line. This allowed me to quantify just how far I had come. Yes, there are so many sad times to our story, but there are so many good times too and these take on even more importance knowing what we do know about how precious life is. Completing the marathon raised £1500 for Sue Ryder hospices and I so pleased that I managed to give them something back. The marathon was hard without doubt one of the hardest things I have done but it was something I had to do. It times like this that I so miss my mum as she was before her illness , I could tell her what I had done but there was no flicker of acknowledgement from her for it and I know she would have loved to share my pride in the achievement.  The week after the marathon passed in a bit of a blur - aching legs and tiredness like I had never known but nothing could dull my sparkle !
The onslaught to Christmas began again. I remembered helping Dad with his Christmas cards the year before and reflected on the huge loss of the last year. I am not a Christmas person in fact I don't really like it , heading to a log cabin with my nearest and dearest would be my ultimate guilty pleasure at Christmas. Hiding away until it was all done with ! Having Rebecca means that Christmas has to be celebrated , gifts have to be exchanged and brave faces have to painted on ! She loves Christmas and despite my dislike of it I always go all out to ensure it doesn't rub off on her. Having such a small family can be a blessing at times but it makes Christmas much quieter  and I know Rebecca finds that hard.
While looking for Dad's address book to get some family addresses for Christmas cards I found some letters from the containing health care ( CHC) team - I hadn't seen these before and It would appear that just before Dad passed away CHC had assessed my mum and decided she wasn't eligible for health care funding - what did this mean and what was the CHC funding they mentioned in the letter ? I started to look in to this and from information on the Internet I found that CHC is a huge resource of money that can be used to pay fully or partly for a persons care dependant on their health care needs and limitations. Interesting - I hadn't really been aware of this before and certainly no one had ever mentioned to me that Mum had been assessed. Mum is unable to verbalise her needs or requirements so I was interested to find out more about this assessment process and how it had been carried out, had anyone been there to articulate Mum's needs and requirements ? I was going to have to do some research about this process and see what it meant for mum long term ? I was not really happy that I hadn't been involved in the process and was even less happy that I hadn't been made aware it was happening. I was going to try and find out why this was the case and the implications of it. This was the top of my list to assess in the new year - we just Christmas to get out of the way now !

Rising to the challenge

Mum seemed relatively stable with her dementia and was spending time in the lounge with the other residents on most days. She was now being hoisted as she was unable to transfer safely. This was something I often observed to see how mum interacted with her carers. She wasn't wary of them at all and trusted them implicitly. This was comforting for me as I knew if she was worried or unhappy with the way they cared for her I would be able to see this in her reactions to them. Anyone with a loved one in care has all these worries constantly, we all know that not everyone who holds a position of responsibility acts as we would like and we all read and see the media reporting on the horrible things humans can do to other humans. Its a constant worry that I have about mum , and her her care , not for any reason or in response to anything I have seen happen, it's because Mum has no way of telling me if anything isn't right with her care. She can't communicate any concerns or share any fears with me and this means I am flying solo on making choices about her needs and requirements, this is huge responsibility and I second guess myself on all aspects of the decisions I make for her. I have to represent her and I have to ensure her voice is heard. There is only me to make the decisions and this makes it all so challenging. Making the wrong decision will have significant consequences for mum and this preys heavy on my mind. I use my visits to mum to just sit with her , feed her , spoil her with chocolates and sweets but also to observe her care and her interactions with the staff. This is my only indicator to her feelings and while I know its in no way reliable its all I have. I talk to mum constantly when I visit , its hard as there is rarely a response from her, I tell her about things that are on the Tv , things that happen at home , things that Rebecca does , mundane things that make our relationship seem  normal. Having our roles reversed is strange and it has altered our relationship over the years. I have become the one who shudders all the responsibility for mum as opposed to her caring for me , this was so difficult in the early stage of Mums decline , showering her , helping her to dress, brushing her teeth, it was so difficult not to feel frustrated at the situation we were in. It hard to deal with the shifting balance of care  and not feel some resentment that its something you cannot control. Without doubt I have felt frustration and resentment at the way mums illness has robbed me of her, robbed her of time with Rebecca and her family and denied her the chance to show my Dad what he meant to her before he passed away. I never mention Dad to her at all , as I would hate this to stir up memories and her to start getting concerned about why he isn't in her life any more.

One big thing was coming closer and this was a challenge I had been  determined to achieve. Before Dad passed away I told him I was going to run a marathon. He was shocked and told me that I should forget it - it was too much and too much pressure to put on myself. I had been a runner for a few years , certainly not fast but determined, I had never run more than 13 miles before so this was a whole new challenge .  Despite training and preparing I was very worried that I had taken on too much and that realistically I couldn't do it. I had been kindly sponsored in my endeavour by so many people my sponsorship total was £1500 so this was in essence an added pressure , the money I was raising was for Sue Ryder the charity who run the hospice where Dad was cared for .It was a small token of how much I appreciated their support when my Dad was in their care. The training had been an added stress , and I had certainly underestimated that time it would take up but I couldn't change my mind now , I had set myself the challenge and I was not going to fail ( I hoped ). Fitting in the training runs became harder and harder as the distances increased but this had to be done so much was riding on me completing it. Neil was running with me and it was a huge challenge for him too.
Running is my way of relaxing - switching off from whats happening around me , but with such a challenge it was hard to be able to switch off , we both felt the pressure of the race as it was nearing and I was so worried Iwould let everyone down.