Should we expect regular reviews in an EMI R/Home?

[strawberrywhip]

MIL was admitted to an EMI R/Home 5 years ago, and is now on the Liverpool Care pathway after a sudden deterioration. To improve matters for future patients and relatives we would like to put in writing some of our concerns..ie no joint reviews of the progress of the disease. I am a nurse and have instigated meetings regulalry for the family, and brought up end of life care discussions, asked them to clarify where we are as her condition has deteriorated... managed to stop over sedation etc etc. The HCAs have been very caring within their experience and training, but there has been minimal involvement from any clinical manager. We instigated assesment for CHC funding which was turned down in 2010... the manager of the home did not seem to know what it was, and we needed to present her with the check list before the process was started. She was turned down, and we would have asked for a re-assesment but things have moved on, and as we only have days to go now the District Nursing team are coming in to oversee palliative care, which is fine.
No one had flagged up the major deterioration... and we had instigated a meeting because she had `gone off her legs`. to discuss the current situation.the floating clinical manager of the home who looks after several homes sent her apologies and couldnt be there, and it was left to an HCA to find dout what we wanted to know. To our great shock we discovered she was now for `TLC`...no previous indications that things had come to this so quickly.
No one explained or discussed the Liverpool pathway..and I talked it through with the family..happy she is on it..but the whole communication system is truly appalling.
We really need to improve the system, and I am wondering what the most effective way to do this is? I know the EMI R/Homes are mainly staffed by HCAs who can be wonderful, but they need a trained nurse to take responsibility and lead the team..what is the legal requirement in these registered homes....and should there not be automatic reviews with families in all cases of patients with advanced Dementia?

 

[Grommit]

Not sure about care assessment in homes Strawberrywhip, I can only report on assessment in our family home.

The NHS and Social Services here have supplied me with a written document stating that a Continuing Care Assessment will be carried out on a 12 monthly basis.

The last one we had was in January 2010.

I am not complaining as I am far more capable of assessing Jean's needs than any pen pushing, under trained representative from the powers that be.

The assessment last carried out in 2010 contained exactly the same questions asked in 2009 and consisted of ticking boxes and referring back to the 2009 answers. No effort was made to assess present needs at that time in 2010.

As far as I am concerned, not a lot of relevant information was gathered at that time and I consider it a waste of 2 hours of my time + brewing tea for two assessors.

 

[Boudeca2007]

If a person has deteriorated so rapidly that they are put on the Liverpool Pathway then is this an ' end of life ' situation ? My Mum died in Novemeber last year due to complications of gangrene of her foot and severe dementia [ she started with FTD in 2003]. As she was a ' self funder ' I asked for her to be assessed using the Fastrack Tool . No one knew what I was on about - the PCT said it should be the GP assessing her and the GP would take no responsibility to undetake that task even though Mum was clearly at the end of life stage. We had to ask the PCT to go into the nursing home to assess her using the Decision Support Tool. She was fully funded for the last 5 months of her life. The Nursing Home Nurse had never even hard of the Liverpool Pathway !!

We are now asking for a retrospective assessments for periods which go back to 2004 up to present. The only time the PCT came in and assessed her was 2007 [ when the National Framework was put into force ] to August 2008. We have been appealing their decsion to non funding ever since 2008 having had 2 IRP's and 2 Ombudsman decisions. Its been horrendous really. Even our Solicitor has dropped our case.

The PCT ' should ' assess people in the nursing homes every 3 months I believe and / or the Nursing Home managers 'should' be asking the PCT to assess if they believe the persons condition has changed. In our own experience this never happened so my advise would be to contact the PCT yourself and keep appealing their decisions to non funding. Also look at the National Framework document as that is what PCT's should be following.

 

[handyjack]

You say your MIL has deteriorated rapidly.. Since when has this deterioration happened? If it's recent, it could be just the progression of the disease, or even the type of dementia. With some dementia there is a slow steady progression downwards, and with others there are fairly sharp downturns levelling off each time, till the next downturn.
How often did you visit your MIL? Someone who visits quite regularly might not notice a steady decline, whereas, someone who visits once every few months (or even longer) might notice the decline on every visit. I know when my mum was dying from cancer (took over a year) I saw her at least 3 times a week and TBQH I didn't really notice the decline in her until about the last few weeks. Of course I knew she was going downhill, but it didn't really register that much , simply because I saw her so often.
In our carehome, Social Services have reviews about every 6 - 9 months on average, but our manager, nurses and senior care assistants are available any time for relatives to ask about a family member in our care.

 

[strawberrywhip]

Rest in peace

Luckily she has a peaceful death in her sleep, but sadly her son didnt make it over from Autralia in time..missed her by a day.
I just feel that a general review by homes who care for patients with dementia charting the path for all of us is helpful.. As someone said if you visit very regularly you don`t notice the changes..but these changes are important as this disease progresses, and homes need to be able to signal to families when weight is decreasing weekly, it is more difficult to take food and fluids..and families can prepare for end of life care, and discuss their end of life care plan..and bring family over who want to be involved. Aftyer 5 years caring for someone you can stand back and see the landmarks, and if there is no overview this can get missed.
There is of course the Fast Track Option which very few places seem to understand.
Anway..its over thank goodness, and my thoughts go out to everyone going through these difficult times. Thank goodness for the Alzheimers society..we have asked for donations at the funeral..what would we do without their support!