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Carers feel alone

15 Sep

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Carers feel alone & bullied

 

In recent weeks, I’ve attended a couple of assessment meetings to advocate on behalf of a client, one of which was a PIP assessment and at the end the client is so happy that they want to hug me, not shake my hand!  I’ve always attended NHS Continuing Care assessments and Social Services assessments and always with good results.

 

With 2 clients expressly saying to me that shaking my hand is not enough, it struck me that there must be so many people out there feeling alone and out of their depth.

 

Sometimes when I’ve turned up at meetings, I can be greeted with something along the lines of “you don’t need a solicitor” or “the meeting will have the same outcome either way, this wasn’t necessary”, but the reality is that it is necessary and the outcome is not the same.  For starters, the person that I am advocating for doesn’t feel alone and nervous, they are more relaxed, as they have someone there on their side!

 

These meetings can discuss very personal issues, things that they don’t like to talk about with friends and family.  They don’t want to burden them with their issues or the keeping of their privacy, but they still want someone compassionate and understanding, who is not going to judge them.

 

Carers are amazing, they do a brilliant job of looking after people and if they all stopped, it would cost the UK billions (£11b for dementia alone in the UK).  They are often stressed because they are caring for a loved one, doing that is enough of a burden, they don’t need to feel isolated as well.

 

So if you are attending a meeting or know someone who is and want someone there on your side, give me a ring.  Love to help.

Appeals

22 Oct

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Appeals

If an assessment has been unsuccessful, then it may be worthwhile appealing.  There are 2 reasons for appeal, one is that the process has not been correctly followed and the other reason is that you disagree with the clinical decision.

The decision is made by scoring the 11 named domains and domain 12 (if used).  If the score is 1 priority, then funding should be granted.  This usually means that the person would be in hospital or a secure unit; it would be unusual for them to be in the community or in a mainstream care home.  If they score 2 severes, then funding again should be granted.  I have come across lots of people who have scored severe in respect of their cognition, but it is not very common at all to score the second severe.  Again therefore there are not many people who qualify in this automatic funding.

The other way that funding is granted is “with a number of highs and moderates”.  Then the CCG will look at the nature, complexity, intensity and unpredictability.  This is the route that the vast majority of people who obtain funding that I’ve been involved with get it.  The problem with this route is that it is very much up to interpretation.  Although the aim of the Department of Health is to have a nationally consistent decision making process, each CCG area does make slightly different decisions and therefore some CCG areas are granting funding to a proportionally larger group.

I generally don’t advise appealing a decision solely on the basis of a problem with the process, as if the clinical decision was denied, then once the process issue is resolved, the clinical decision will still stand and funding won’t be granted.  A complaint and an apology can work well to resolve these issues.

If there is a disagreement regarding the clinical decision, then the matter is worth appealing.  The first level of appeal is local resolution within the CCG.  This should be decision making, but not always, sometimes it is just a matter of explanation of the process, so before I go, I ask to make sure that it is decision making, I don’t want to sit there whilst someone explains NHS Continuing Care Funding to me!!.

The next step after local resolution is a CCG Panel meeting, so an entirely new group of people from the CCG should sit with the family & advocate and discuss the case, the needs of the person and what the differences of opinions are in the scoring.  The Panel meeting can be intimidating.  There is a Chair of the Panel, a representative of Social Services (hopefully) and someone from the CCG.  These 3 are the decision makers.  Therefore walking into a room with this many people when you are about to talk about a loved family member when they are unwell can be intimidating.  It is also an opportunity to talk about what has happened since the assessment meeting, which might shed more light on the situation, such as a situation at that time that was considered temporary at that time, may be permanent.

Once the matter has been finalised within the CCG the next level of appeal is to the Strategic Health Authority.  They also invoke a Panel process, as well as the chair, representative from a different CCG and representative from a different region by social services, there is usually someone taking minutes and a clinical advisor.  The process is slightly adversarial,  in that the CCG go through their process and often defend their decision and position, whilst the family are still trying to argue that their loved one should be eligible, giving clear reasons why they disagree.

If the decision is still unfavourable, then there is appeal to the Healthservice Ombudsman.  The Ombudsman will not make their own clinical decision and substitute it for the SHA or CCG’s decision.  They will look at the process and if they consider that the process has been reasonably followed, they will accept that the decision is reasonable, unless it is so clearly wrong that it would be considered unreasonable.  The Ombudsman is therefore a good place to tackle administrative issues along the way, but I have not found that route very helpful to tackle clinical decisions that I disagree with.

 

The Recommendation

15 Oct

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NHS Continuing Care Funding – The Recommendation

 

Having gone through the 11 named domains and the mop up clause of domain 12, the next part to consider is the recommendation.  As individuals or advocates, we are not involved in this part, it is for the Multi Disciplinary Team (MDT) to decide on the recommendation.  Their recommendation should be supported by the Panel unless there are clear and articulated reasons for going against their recommendation.  Those reasons must of course be fair and reasonable.

 

So how is the recommendation done?  The MDT must then, metaphorically speaking, piece the person back together, having taken them apart with the 12 domains.  The MDT then looks at the “Nature, Complexity, Intensity and Unpredictability” of the individual.

 

The advocate can discuss the recommendation with the MDT, but often the MDT won’t give a recommendation at the assessment meeting, sometimes because they are not recommending funding and don’t want to risk a confrontation in front of the family.  If they are recommending, then they might say it in front of family, but lack of discussion about their decision should not be taken as not recommending.  Sometimes they just need to go away, review their findings & think about it or possibly get some more evidence before they are able to make their minds up.

 

The nature of the needs is often about one or two conditions and the range of needs as a consequence.  So for example, dementia might be the condition and from that comes confusion, poor communication, poor risk assessment, poor continence etc.  Nature, unless it is an unusual condition is not usually the element that will be most important.

 

Complexity is often about how different elements of someone’s condition interact with each other.  So for example, if someone has poor mobility and therefore struggles to get up to go to the loo, they can end up with a UTI due to reluctance to drink.  The UTI, like chest infections, can set up a kind of toxicity in the body, which then leads to that person being overall physically and mentally very unwell during the period of the UTI (or chest infection).

 

Intensity is about a high level of need, this is often because that particular need has scored high or severe in the various domains.  It is about a lot of need, so someone underweight would need constant encouragement to eat.  Encouraging someone to eat is not necessarily a high skill task, but needs to be done many times during the day.  It could however require a high skill level such as specialised wound dressing of the skin, which needs regular changing.  It can take quite a while to do a complex dressing, which might need changing every few days, but not multiple times per day.

 

Unpredictability is what it means in normal language.  So if someone has a fluctuating health condition, then it would be unpredictable.  It could also be something that reoccurs regularly, like having lots of UTIs or chest infections.

 

It is hard to explain in simple terms why someone should be funded for Continuing Care and others aren’t, but it is about the persons needs being difficult to look after.  That doesn’t mean that the person has difficult behaviour (although they might have), it is that their healthcare condition/s are difficult to look after.  Someone with regular, but fluctuating aggressive behaviour might be difficult, but someone with a complex skin care regime would not be seen as difficult, just difficult to look after, they need a lot of time and skill.

 

I’ve found that the most important one of these is unpredictability and the least important is nature, with complexity and intensity someone in the middle.  But if the person is challenging to look after, then hopefully they will get a positive recommendation.

The Domains – Domain 12

8 Oct

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Domain 12

 

Domain 12 is the additional place to put something that has not already been covered by the first 11 domains (as there is no double scoring).  There is no information about what should be included and little guidance, as there is with the other domains.  It does however have to be a healthcare need and something that has not yet been covered by the other domains.

 

Mostly I find that people are covered well by the first 11 domains and often don’t score anything in Domain 12, but as with everything, there are exceptions.

 

The exceptions that I cover are addiction of some kind, but to the extent that is it a problem.  Which is when an unhealthy relationship with anything begins to affect the person’s ability to function day-to-day, then the unhealthy relationship becomes a dependency.

 

I’ve had a number of clients who were addicts (although I appreciate that this is outdated terminology and dependent is the preferred terminology).  I’ve had clients that had dependency on alcohol, tobacco and clients who were just looking for the next high, whatever it was, so if alcohol and tobacco were not available, then sex would do.  The care regime will try to manage their dependency, but this is something that they are encouraged with, rather than a therapy they have chosen in order to beat their dependency.

 

I also score excessive sleepiness in this domain, as it can become a barrier to intervention, so that, similar to a period of being unrousable, it is not possible to take food, drink or medication when asleep.  It is not uncommon that toward the end of life, someone becomes ever increasingly sleepy, so it is a question of whether or not that impact on the provision of care.  This sleepiness is something that they can be roused from, so is not an ASC, but just not easily roused and even when awake remain relatively sleepy, so if they are being fed for example, it will take a long time and they may have minimal appetite and would fall asleep again very quickly, possibly even part way through the meal!

 

I’ve also scored an overall generic frailty, which can happen with the very elderly or at the very end of life.  I’ve had a few clients in the 90s and 100s and they do appear to have this kind of fragility.  It can be hard to describe, other than generic frailty, but they often do seem very fragile, as if they could easily “break” (which I appreciate is not a great description).

 

I’ve also had a client with non aggressive cancer, which would need monitoring to make sure that it did not become aggressive, as the treatment regime for aggressive cancer would be very different from non aggressive cancer, so the monitoring is for the potential change.

 

The things that would not be included and scored in this domain are the things that don’t score for Continuing Care, such as the requirement for 24hour care or that they would be unable to live alone.

 

The scoring of this domain is also very hard in the absence of any guidance.  What I try to look at when scoring this domain is the skin and drug domains.  The low and moderate scoring in skin covers the risk of pressure damage, with low scoring when the monitoring is daily or less frequently, so monitoring of non aggressive cancer would be daily or weekly and would score low.  The skin domain for moderate is about the treatment or monitoring for pressure damage multiple times per day, so if the domain 12 issue requires basic treatment or monitoring multiple times per day then it would score moderate.  The drug domain for high is about skilled monitoring for side effect or fluctuations, so any domain 12 issue that required more than just basic monitoring or treatment multiple times a day, but was effective would score high and if it was not effective, would score severe.

 

This is a hard domain to deal with and the PCTs are often reluctant to accept anything in relation to this domain, but if there really is an issue that is not covered by the other domains, then I will make the point to have it scored in this domain, even if the MDT disagrees with it being included in domain 12, it will be brought to the attention of the Panel.

The Domains – Altered States of Consciousness (ASC)

1 Oct

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Domain 11 – Altered States of Consciousness (ASC)

 

This domain has an anomaly within it.  The National Framework says that the diagnosis of any one condition is not the reason to grant funding, but this domain has the priority level of coma.  So the diagnosis of coma will obtain the funding.  The only proviso to that is that the coma has to be ongoing.  I’ve had a few clients that have had issues that fall into this domain, but so far, they have been transitory, even if they have lasted for hours, their state of being in ASC still comes to an end.

 

So the key question to this domain is what is an “Altered State of Consciousness”?  It is about not being fully conscious.  It is commonly about having a fit, such as epilepsy or a stroke.  Fits and strokes have magnitudes of seriousness and therefore their side effects and consequences have magnitudes of seriousness.  But ASC can also be a state of not fully unconscious, but at the same time not fully conscious.  I’ve had clients that become “vague” and this is not a cognitive decline, this is for a short period and is different from their day to day presentation.  They often need to sit or lie down whilst this is happening.  It is about being in a state of mental and physical “being”,  where they cannot fully engage with the outside world.  They seem “awake”, but just not fully “there”, however when the ASC passes, their normal day to day presentation will return and they can engage with their environment in the way that they were able to do before.  I’ve also had clients who were “unrousable”, so asleep, but not able to be woken from that sleep and this can last for hours at a time.  The person is safe, in that they are tucked up in bed, comfortable and warm, but unsafe in that if they remain unrousable when they need medication or food, they cannot be woken to give it to them and this can have a detrimental effect on their wellbeing.

 

ASC can also be Transient Ischemic Attacks (TIAs).  A TIA is a mini stroke, it can be very fleeting and presents as though for a few seconds the individual becomes vague and then returns.  If they were on their own when it happened, it would be difficult to tell that it happened, other than their presentation may have changed as a result.  Like any stroke, there can be some brain damage, which will lead to an altered presentation going forward, as the individual will have lost some ability.  This is often seen as a “stepped decline”, where someone will plateau, then from one moment to the next change, then plateau again until the next change.  This is a common presentation with vascular dementia (as opposed to Alzheimer’s, which tends to be a straight line decline).

 

The next thing to consider is the frequency they are happening and very importantly, what is being done about it.  With for example TIAs, often there is little or no intervention, even if the carers do realise that something has happened, they just deal with the new presentation.  During or after the ASC there could be either a prompt and/or a skilled response to the situation, which may include an admission to hospital.  The prompt and/or skilled response does not have to include a trip to hospital, but might include a carer sitting with them one-to-one for a while; it may include a drug therapy or other additional support.  It is also about the risk of harm from the ASC, as some can have virtually no effects, such a very small TIA.  Then consider the frequency, are these occasions of ASC happening daily, weekly, monthly or yearly?

 

There is no severe scoring in this domain, but there is a priority, which as discussed includes coma.  The alternative priority score for ASC is something happening most days, that does not respond to treatment and there is a severe risk of harm.  I’ve never met a priority client yet, they should not have issues with funding, but should be cared for in specialist units in most likelihood – but I stand to be corrected.

The Domains – Drug Therapies

24 Sep

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Domain 10 – Drug Therapies and Medication

 

This domain is split into 2 areas; it is about pain and the management of medications. I’m going to discuss the pain bit at the end of this blog.  Medications effectiveness and side effects vary from person to person.

 

Almost every older person has some medications and within a care home, they would be managed by the carers.

 

Someone can be non compliant with their medications, either refusing to take them or spitting them out.  Non-concordance, within the definitions is a lack of understanding of medications (and their potential benefits and side effects).  The assessors rarely score moderate for someone cognitively impaired and not understanding their medications, so moderate is really based on non compliance.  On occasions, some medications are given in liquid form and as it’s easier to have a slight slip of the hand and dispense more, this takes more skill.  This should not be confused with dispersible medication, which is a pill medication that has been dissolved.  There is no risk of a slight slip, as the pill is already a prepared dose.

 

Some medications or the regime of administration needs careful monitoring.  Some medications can have some nasty side effects, so need monitoring for that reason.  Some medications need to be monitored for their effectiveness especially closely, (as all medicines need monitoring).  This monitoring of medications can vary and some people on some medications can have a different response and the medication is not affective, so it is not simply about noxious medications that have nasty side effects.  I’ve had clients who take a medication and experience the side effects and no benefit and others that experience the benefit and little or no side effects.

 

There is also what is known as PRN medications, which are given “as and when required”.  If someone has to make a judgement about when a medication is given, this requires skill and monitoring.  This however is subject to what I choose to call the “Boots Test”.  If you can go to a chemist and obtain a medication without a prescription and without limit, then it is not that noxious, so things that pass the Boots Test, even if given PRN, would not score as highly as other kinds of medication.

 

Medication can be successful, but the situation can arise when it is not working.  This often means that the medications are changed a lot.  It could be that the dose is changed or the time of day it is given is changed, but it is not uncommon if there is a real healthcare problem that mediations are changed almost weekly to try to work out the most effective way forward.  Sometimes it is possible to find a regime that works, but not always, sometimes drug regimes never work!

 

The other aspect of this domain is pain, so the scoring is about the level of pain and is relatively self explanatory on the DST.  It is about the impact on other domains or the provision of care, so it is about looking for what the impact of the pain is.  Is the person eating, drinking and sleeping?  Are they anxious, withdrawn or reluctant to mobilise etc?  It is also about what pain medication is being used and whether that medication is working or not.  There are increments of pain medication, with paracetamol at one end of the spectrum and intravenous morphine at the other end, with plenty of things in between.

 

The other thing that gets considered in this domain is the number of visits by healthcare professionals to review the person, this can include Consultants, District Nurses etc.  So if the person gets a visit on average once a month from someone to consider their healthcare needs, then that is far more than someone who only sees their GP once a year for a medication review and sees no-one else.

 

 

The Domains – Breathing

17 Sep

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Domain 9 – Breathing

 

This domain is about the physical ability to breathe, which can be affected by psychological issues, such as panic attacks.  Usually when breathing is affected by psychological problems, then they tend to be periodic rather than constant.  This is a bit of an over generalisation, but that is usually what I’ve seen in my clients.  Those clients who suffer from panic attacks need comfort and reassurance and hopefully the worst of the stress passes, at least for a while, until the next panic attack strikes.

 

Of the many clients that I’ve helped, there have been a lot with no breathing issues at all.  There have also been quite a few with relatively mild breathing problems, that don’t need inhalers.  They get breathless on exertion, so that when they walk, they have to do so relatively slowly.  This can happen as a result of a level of heart failure.  It would prevent them going for a long walk, but in all likelihood, they wouldn’t be going for a long walk anyway, as they have other health problems that prevent them from doing so.  Again, a huge generalisation.

 

Breathing issues more than this is unusual in relation to the clients that I have had.  I’ve have had quite a few that would score as above as “no needs” or “low needs”, but usually not more than that.  On occasions I’ve had clients with asthma or occasionally COPD or plural plaques, but these conditions are thankfully relatively rare.   I’ve had lots of clients that have some level of heart failure, which often presents as oedema in their legs; those clients are often breathless on exertion.

 

After these low levels of breathing difficulty there is breathlessness that has an effect on their lives and how they would like to live them, otherwise known as “activities of daily living”.  When people are starting to have problems that are more than just a little breathlessness, this is when they will start to have therapies for them.  They could be inhalers or nebulisers or oxygen.  This domain, like the other physical health domains are easier from the aspect that these tend to be factual issues and are not so subjective.

 

It is therefore about whether these interventions help or whether people are still have trouble breathing and if they are having trouble, how much trouble.  They may be able to respond to the treatment, even if they still have some breathlessness or the therapies are not really helping and they are still gasping for breath.  The individual could have a tracheotomy, but this is unusual, but again factual and not subjective.

 

Beyond simply having a tracheotomy is a level of need this the tracheotomy is not so successful and therefore requires some suctioning; I’ve never had a client with a tracheotomy yet.  Severe difficulties breathing even at rest is, again, very unusual within the community.  This would be someone continuing to gasp for breath no matter what was tried to assist them in terms of therapies.

 

If someone scored priority, it would expect them to be in a specialised unit or hospital with the invasive mechanical ventilation.  I would therefore expect them to be receiving the treatment free at the point of delivery, rather than a candidate for NHS Continuing Healthcare funding in a care home or in their own home.  I stand to be corrected.