I have the DST assessment for my husband this Thursday which has completely surprised me at how quickly this is happening given our social worker only completed the initial Checklist 2 weeks ago so I am feeling anxious and unprepared.
When I have revisited my diary of events I realised my husband had more falls or nearly fell than i obviously remembered when going through with the social worker and some instances of choking on food so I feel some of the scoring on the checklist could have been higher
My main concern is how do you evidence the domains for Psychological, Cognition, Behaviour. My husband is not aggressive but very restless and agitated at times. I anticipate most of his day to day needs and make all the key decisions regarding his health and care. He doesn’t complain but I’m sure he must be depressed. He barely speaks or asks for anything. I’m not confident we are going to be successful especially when the social worker advised only 8% success rate for CHC funding has been awarded in Essex.
Any help would be appreciated
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Licquoricelover
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Keep in mind what you are hoping for. Does your husband need constant supervision? Does that include night time?
If so, you need to emphasise what happens if he is unsupervised. You need to get across that his needs wouldn't be covered with 3-4 care visits in the day. The MDT shouldn't need to be reminded that they are assessing what would happen "if current care was no longer in place".
If his care needs are all predictable (feeding, changing, medication) you are less likely to be successful and they may determine that he "just" needs personal care (social rather than primary health need). You have to emphasise that he has those needs AS WELL AS a number of situations that you cannot plan for. In our case "going to the toilet" was a key factor since he would mobilise immediately whenever he had the urge. There may be other triggers in your case.
It sounds like the fall risk is a key element, so it would be good if you could evidence that it stems from behaviour (impulsivity) and cognition (lack of insight into the risk, lack of planning).
Have you tried the "clapping test"? Explain to your husband that when you say "start" you want him to clap exactly 3 times. Then say "start". If he "jumps the gun" and starts too early, that is proof of one type impulsivity - he "can't wait". If he continues after 3 claps, that proves another type of impulsivity - he "can't stop".
My husband had both types, and the simple clap test is an easy way to demonstrate it to the multidisciplinary team (in addition to your stories about falls that happened or falls you managed to prevent). Dealing with either type of impulsivity adds complexity and unpredictability to the care needs and underpins the need for supervision.
Psychological needs may be difficult to demonstrate. We were heard when I told about how he enjoyed visitors and would be restless and excited in advance - and how he liked going out to see friends and family - despite the practical difficulties involved in transport and communication. I also shared how he would complain he was "lonely lonely" if he went to bed and I stayed up doing chores. This went a long way towards supporting the plans for looking after him at home, even though this didn't count as particularly high needs. We emphasised that he would nearly always be offered choices (what to eat, what to wear, when to sleep etc) even though he couldn't speak much. We also demonstrated that he was keen to do things himself where he could, and that we always had to adapt the help and care to allow him to be as independent and involved as possible. This featured in the report.
Do you have people with you for the meeting? We had my husband's carer (PA) with us, and I also "forgot" to cancel his regular Neurophysio session, so the team were treated to a first hand view of the dynamics and how adaptive we had to be. He demonstrated how motivated he was for going walking outside with the support of both the (privately funded) professionals - and also how difficult it was for him to wait while getting ready, dressed and equipped in a safe way.
Part way through the meeting, my husband decided he wanted his shower, and we then all heard the squealing and laughter from the wet room when he had grabbed the shower head and turned it towards the PA. While primary health needs are the focus of the DST, it's important to demonstrate all the factors that go into psychological welfare and quality of life i.e. JOY.
If you could do one or two sets of 24 hour observations, this could be really helpful. There you note every single time you interact or intervene - what was the situation or behaviour, what was the risk or need, how did you address it, how did your husband respond. This is where you can really document how you constantly have to assess the situation to avoid your husband getting distressed, and how often you address his needs proactively. It's more than the "falls diary" where I'm sure you already capture "something bad happened". The supervision/observation sheet shows "something bad could have happened, but this is how we avoided it or made it better".
If you share your email address privately to me in the chat, I can send you some of our documents, in case it helps.
I just tried the clapping test but he is unable to clap his hands together. He understood what I was asking but unable to respond as difficulty trying to move his right hand as constantly trembling
Hi i out at the moment so am unable to offer a detailed response. However 2 things. On the PSPA website there is a very good CHC document where they have detailed many PSPCBD symptoms you will be familiar with against the DST criteria. If you can't find it give them a call in the morning and they'll help you find it. Secondly if you put CHC into this site's search bar and filter to this group you will find many useful posts with info about DST assessments. And a couple of other things I've thought if on the hoof.. list all the medical interventions your husband has had in last 6/12 months - appts, hospital, visits, falls etc, shows medical rather than social need. Also think about and write down everyone you do in great detail to demonstrate how highly skilled care needs to be - interpreting needs, mood, pain, helping directing movement, reassuring, emphasise the risks, dangers if you're not there doing it, you probably do so very much more and provide complex care much more than you realise but when you lust it on paper it becomes clear. Also think about examples of complexity eg when rigidity or lack if cooperation affect ability to move safely, where involuntary eye closure affects safe mobility or feeding, where aoathy affects food intake etc. Unpredictability where he may need or want strange things at odd times or try and move or say he wants to move when he can't, Intensity when an infection affects breathing or incontinence and nature where the illness has progressed, perhaps sometimes steadily but sometimes with a sudden change. Hope some of this is a little helpful xx
Also just remember, be honest on how bad things really are, don’t put a brave face on it.
Make notes of things that happen even the unexpected, choking, coughing on fluids/foods then not at other times - anything that demonstrates how unpredictable this is and how severe it can be.
Some great advice from others already. Hope it goes well.
The best way to tackle the assessment is by making all the notes as if someone was coming in to care for your loved one and write down everything they will need to know. This is from falls, to eating issue. It's almost like you are prepping a step by step manual of the day to day to make the person aware of all eventualities that you have already encountered. But highlight that what would happen if no one was there to help your husband.
When it comes to cognitive, this can include confusion, hallucinations, the ability to hold sentences and conversation, words (my dad couldn't remember certain words so would fill them with whatever the closest one his brain could make sense of). Any behavior- and it doesn't have to be aggressive, this can include depressive episodes, tantrums, random bursts of laughter. The fact he doesn't speak is a major aspect of the behavior and cognitive sections.
If this is the first round for the DST, it is the easier one. The second one is incredibly hard and they make it very difficult. The people who make the decisions are primarily bureaucratic pencil pushers who have no clue, so you really have to stress and break it down for them how much this disease impacts.
With my dad, we were rejected the first time, but it was so bad I made a formal complaint and rebuffed the decision, so they had to reassess. The decision took a further 3 months for them to make with it going up to the highest panel because they just could not understand the disease and it's impact- plus they didn't beleive a disease could move as rapidly as my dads did.
If helpful, I can send you via email my complaints letter that breaks all the 12 sections down (t is 20 pages long fyi) but might give you a idea how to fight for this funding.
My dad had CBD. He was bedbound, could not communicate, was on a puree diet and had thickeners for his drinks due to choking, was doubly incontinent, could not independently move himself into different positions in bed, suffered from re-occuring chest infections and yet we were refused CHC. The District Nurse was the most unhelpful person we encountered so I got in touch with the Local Hospice to see if I could get them onboard and the Palliative Care Consultant wrote a recommendation for dad to be fast tracked and also dad's specialist nurse at the hospital who also wrote a recommendation for fast track due to his terminal diagnosis which dad was eventually awarded.
The CHC system is seriously flawed and I just do not understand how poorly someone needs to be to get this.
I would recommend you get as many people on board as you can such as your husband's GP, any Specialist Nurse he may have to put their recommendations down in writing.
The problem is, the Assessors we had, a Social Worker and a CHC Nurse knew absolutely nothing about this condition and in fact the first thing they said to us in the assessment was that my dad had Motor Neurone. I soon put them right.
DO NOT give them any information regarding your finances even if they ask as they are NOT entitled to know this as CHC is not means tested.
here are some of the things from our assessment that seemed to have been significant or scored highly - many of which are currently managed but as in a previous comment - what matters is the existence of the need - just because it is currently being met doesn’t make it any less of a need. During the assessment I reminded the assessor of this at least once and he thanked me for that !
General - Need for 24 hour care; bad experience with respite in nursing home (they couldn’t meet his complex needs)
Breathing - high - cough; sleep apnoea; previous aspiration pneumonia
Nutrition - high - PEG fed; aspiration risk; swallow failure
Continence - moderate - doubly incontinent; depends on 6 personal care calls daily as needs hoist and two carers
Skin - high - because of incontinence and loose stools - risk of pressure sores
Mobility - high - because of CBD - cannot weight bear - spasms - spasticity-hoisted with two carers - bed wedges to prevent falling from bed
Communication - moderate - speech slurred- because of loss of use of hands could not use call bell in nursing home
Psychological needs - high - restricted ability to enjoy life because of restricted mobility - wheelchair access - can’t visit friends and relatives’ homes because of accessibility issues - and PEG feeding
Drug therapies - high - PEG for meds - history of C Diff - suggest list any history of bad reactions to prescribed drugs - under district nurse
Altered states of consciousness - not applicable
Good luck with the assessment. If in doubt - mention anything that might be relevant - the assessor we had was very sympathetic and thanked me for providing so much of the evidence that was needed to support and demonstrate the the score level. I think the number of relevant examples adds weight to the argument. I hope your assessor is as understanding
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