Panels

Since I’ve been employed as a social worker one of the constants in my working week has been the presence and existence of ‘panels’ in many different forms. There was a brief stage when we were told not to refer to them as ‘panels’ but rather meetings but it’s all the same thing at least, in the setting in which I’ve been working. They are groups of managers and professionals of a variety of provenances making funding decisions on behalf of the local authority or health service.  Of course sometimes they say it is about joint decision making (which is why the word ‘panel’ is frowned upon now) but that’s really a facade. I make recommendations but I have little authority over funding decisions.

Different local authorities often have different mechanisms so my explanations of the panels that I might attend come with the proviso that things are arranged and organised in a variety of ways.

We have panels which primarily make decisions about packages of care that exceed a particular baseline cost. That baseline has changed a variety of times but generally managers in each team are given a certain ‘threshold’ to which they can approve funding requests but above that and any application for funding for residential or nursing respite or long term care have to navigate a ‘panel’.

We have separate panels for high cost personal budget packages which would be provided for care at home and those which approve residential and nursing care/respite and continuing health care (which authorise applications for long term payment for care by the NHS )

Going to panel generally involves the transfer of reams of paperwork. I’d probably say it’s the most obvious way though that I provide the function of advocating for a particular service user or family member when I ‘present’ the situation to those who make the ultimate funding decisions.

Contrary to what some people might think, I have absolutely no vested interest in the local authority or NHS ‘saving’ money by not agreeing to a particular package – indeed, I won’t tend to bring something to the panel if I don’t wholeheartedly agree with it myself. I am a great advocate of money being spent where it is needed.  I have a general wish to see public money well-spent of course and I understand the need to ration resources but if I bring something to the panel and authorise an assessment, it is because I believe that that is what is needed according to my professional  judgement and as far as that’s concerned, balancing the rest of the local authority’s budget is not an issue I consider (which is obviously why these panels exist!).

Similarly with the Continuing Health Care Panels  I cannot conceive of a situation where I would bring someone to that panel if I didn’t absolutely want and believe that they should get that funding.  If I attend and collate a report it is because I and the multi-disciplinary team behind the report, believe in it.  I absolutely want people to get what they are entitled to and have no ‘secret instructions’ to try and deny the funding. The rules though are not altogether clear but it suits the funding parties and the governments to keep the rules complicated and unclear. There’s a lot of money at stake.

The panels are open to service users and carers but for me, personally, it’s very rare that service users or carers attend with me.

I have more often  had family members attend Continuing Health Care Panels with me and found it is a much better way of working as it allows a lot more transparency and removes one of those bars between me trying to put the words of others in my mouth.

By now, I know the people who sit on the panels and they know me. That’s a massive advantage in being able to persuade and cajole. It makes me realise how useful it is to have built up links and a reputation among the more senior management. I like to think that a trust develops.

Panels used to scare me because I’d be questioned, often in detail about the proposals that would have a substantial monetary implication for the local authority. My paperwork and assessments are examined in great detail and a level of scrutiny applied. Now that I’m more confident, I tend to take pride in presenting my reports and welcome the questioning as I know what to prepare, what to highlight and what to expect.

I’ve had panels where paperwork alone is assessed and where we are not required to attend in person.  I prefer being there ‘in person’ especially when there are any question marks that I feel I can clarify.

One of my favourite tasks in my work is feeling that I am genuinely able to advocate and navigate a person or family through the muddy mired waters of local authority funding streams and decisions. I wouldn’t say I enjoy the panel process although there is a satisfaction in having something approved especially if it is something you feel might be hanging in the balance, but I don’t dread them as much as I used to.

As for now though, it’s just another part of the process of seeing a paper ‘plan’ through to fruition.  I know they work differently in different areas – indeed, I’ve seen them in different forms in the local authorities I’d work for – but that’s how they work – whether they are called meetings or panels, the effect is the same.

And that’s the explanation of what the panels are – the other side of each discussion I have and each decision that is made by the faceless ‘management’ that I sit in front are that they are desperately important decisions to each person who is reliant on the authorisation of that funding to allow them to life their lives more fully, to allow their family to have access to respite services. My job as I see it, is to bring the paperwork and paper assessments ‘to life’. I am not only writing about a person on a pro forma, but I’m able to flesh out the requested questions and documents with a person, with a family, with relationships.

That’s why I don’t mind attending  these panels as much as  I used to. I’m not frightened of them anymore. I see them as an opportunity to take a crucially important role in someone’s life and to speak for them and not  just about them.

An Assessment of Capacity

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I am constantly assessing capacity. It isn’t always done on the formal paperwork that we use when a major decision or one likely to have major consequences is being made.

Sometimes it is  a simple action that might be almost subconscious. Does the person who is drunk on the night bus know which stop he wants to get off at? Sure,  he’ll have capacity tomorrow but by that time he might be in Hertfordshire.

I wouldn’t say it is something that only happens at work. Incapacity happens to all of us at times. It might not be drunkenness but rather sleepiness.

Capacity and incapacity doesn’t just happen to older people with memory problems.

However, the Mental Capacity Act 2005 is very clear that attempts should be made to wait until a person has regained capacity – if it is a temporary state – when a decision is necessary.

And each decision and assessment of capacity is taken independently. Someone can have the capacity to make one kind of decision about a preference of daytime activity or preference about living arrangement but lack capacity over another matter – like managing finances.  It is not wholly uncommon for me to do a couple of capacity assessments simultaneously and have different results for each.

I want to look back at a  capacity assessments I’ve done in the past. I’ve changed or amalgamated details to anonymise the scenarios and obviously the names are invented!

Mrs Smith has Alzheimer’s Type dementia. She gets very confused by details and has a deteriorating short term memory. She lives alone. I was asked to assess and make a decision about her capacity to manage her finances due to some concerns that she had been giving money to a ‘friend’ who wasn’t really a friend and was now hassling her for more money.

It seemed initially quite straightforward.

The Capacity Act specifies 5 principles and on that basis I undertook the assessment.

The first is to assume capacity unless proves otherwise. This is sometimes quite a  hard one with some background information in your hand. It is more difficult to assume this position than it might seem.

All practicable steps must be taken to help that person to make a decision

A person is not unable to make a decision because their decision is unwise or we wouldn’t agree with it

Any decision taken on behalf of someone who lacks capacity must be done in their best interests

and – it must be the least restrictive option.

With those principles in the back of ones head – there are 2 other things to consider when actually assessing whether someone has capacity to make a particular decision according to the Mental Capacity Act 2005.

Firstly – there has to be some kind of ‘impairment or disturbance of the mind or brain’. This can be permanent or temporary and is incredibly broad. but then, this disturbance or impairment has to be sufficient to prevent them from making a decision at that time. If you can wait for a decision, you must.

These kinds of assessments would take place thousands of times in hospitals up and down the country as people are admitted who lack consciousness and decisions have to be made before there is a chance to ask about treatment choices.

In the case of Mrs Smith, I am visiting her at a time of her choice – late morning – we are in her home and she is familiar with me. Her dementia would be the impairment or disturbance of the mind or brain and while she has good days and bad days, the lack of significant variance in her cognitive functioning is sufficient for me to be assured that a time delay would not lead to her condition improving.

Having passed those hurdles there are four parts to the actual capacity assessment.

Namely that Mrs Smith

1. Understands the information relevant to the decision

So I ask her in general about her finances – how she gets her money, how much money she gets, what would she do if her money wasn’t available one week or didn’t turn up?

How much does she spend on her weekly shop? How much is a loaf of bread?

These might sound minor but it builds a picture for me of her understanding of finances and proportions of money. If she thinks a loaf of bread costs £50, giving £50 to her friend is going to have different implications to her.

These are also fairly straightforward questions to build into a conversation. It doesn’t have to be a form-filling frenzy and ideally should be in the form of a relaxed conversation.

I also need to be clear that Mrs Smith understands the implications of her actions.

So I might ask about savings and what she would do if she were £50 short one week – would she still have enough for the essentials?

2. Can the person retain the information given

I might ask back some of the questions I’ve asked previously or just add a gentle reminder or two about what I’ve already said.

Where was I? Ah yes, thanks for that, Mrs Smith, I was asking you about your pension, wasn’t I?

3. Weighing up the information as a part of the decision-making process

So Mrs Smith, you know when you are £50 short for the pension because you’ve given it to Mr Brown.. what is the result of that?

Sometimes someone might have a particular ‘block’ about the consequences of a particular actin – so Mrs Smith might say, I know that I am short but there’s always more money where that came from. I never run out of money on my £95 a week pension and lack of savings.

OK, not the best example but she  might be able t retell me the outcomes but not relate them to her situation directly or use the information given (she is £50 short) and find the relevance in her own life.

But that’s isn’t what she said.

She said that she had always given money to Mr Brown. Yes, it left her short of cash as it always had, did and would but she would struggle by. She just bought less.

4. The last part is that the assessee has to be able to communicate the information back.

Every effort has to be made to facilitate this for people who might have some kind of sensory impairment. Any kind of communication ‘counts’ – it doesn’t have to be verbal at all.

Mrs Smith was able to talk profusely so communication wasn’t a problem for her.

In the end, I decided that she did have capacity to make decision regarding her finances and fell into what I, personally, would consider the ‘unwise’ decisions area. She had, I learnt, given money to people who asked her for help, for many years. This was not new behaviour when she developed Alzheimer’s. She was more vulnerable now but that is for the safeguarding procedures to manage.

Just because she acts in a risky way doesn’t mean that she lacks capacity.

Just because she need to take actions to protect her, doesn’t mean that she lacks capacity.

It is just a simple example. I hope it’s useful to someone ‘out there’ in understanding the process.

We have lots of forms to complete, of course, but I try to jot down a few questions in advance that might take me through the first stages of ensuring someone understands the decision and has weighed up the information given. Each decision though is unique.

I would involve family and friends as far as possible because it builds a picture of who that person is and was and what they would want if a decision has to be made on their behalf.

Sometimes it is too easy to assume that someone lacks capacity from looking at their history and documentation.

Sometimes the harder decisions are to be made when capacity exists.

Lack of capacity does not just mean ‘we can make a decision for you’ – the decision has to be right for that individual. Not right for the professional. Not right for their family. Not what minimises risk.

But what would that person choose to do if they were able to.

It can be more of a quandary than first appears and is never a decision to take lightly.

The Decision Maker

Over the week, I have a few posts planned about different aspects of the Mental Capacity Act 2005 – it’s partly because I’ve been asked questions specifically about it and partly because I, personally, find the area enormously interesting.

Working, as I do, primarily with older adults, means that I work with a lot of people with dementia of one form or another. Working with a lot of people with dementia means that the issue of capacity or lack of it is one that we deal with every day. While far from setting myself up as an ‘expert’, I thought it might be interesting – possibly helpful – if I shared some of the issues that have raised themselves in our own borough.

 

When the Mental Capacity Act 2005 ‘went live’ we had a lot of training about capacity, capacity assessments and the roles of IMCAs (Independent Mental Capacity Advocates).

In a sense though, the Mental Capacity Act just firmed up a lot of practice that had been  happening within the sphere of ‘case law’ or ‘common law’.

One thing it does do though, is provide more protection and guidance for anyone who carries out an assessment of mental capacity – and make no mistake – anyone can carry out an assessment of mental capacity.

Today I want to look at the idea of ‘The Decision-Maker’ as it is one that still causes a great deal of angst in the office.

Who is the Decision-Maker?

The Decision-Maker is the person ‘on the ground’ so to speak if they suspect that the person lacks capacity and  are there (figuratively as well as physically)  when a decision needs to be made.

So the carer who goes in to someone’s house in the morning to someone who cannot make a decision about what is ‘weather appropriate’ clothing, might be the decision-maker in that case.

A husband might decide that it is best for his wife to have steak for dinner rather than chicken because steak was always her favourite. He is the decision maker.

These are the kind of snap decisions that might not immediately come across as being subject to an ‘assessment of capacity’ but many people – especially those involved in care – would take thousands of decisions in the ‘best interest’ every day.

Most commonly it will be family members or carers who make these decisions.

Sometimes, of course, it is the involved professional.

Last week, I was sent a letter from a GP asking for an assessment of capacity for an individual for whom I am the care coordinator because she was refusing to take her medication. Could tell him if she had the capacity to refuse medication?

I responded that I could not because the GP is the decision-maker.

(Of course, while happy to advise and support -  the decision is not mine to make).

Another nurse in the team discussed with me a conversation he had had with a social worker in one of the community teams who had asked him to ‘make a decision’ about the type of care a particular resident was having at a nursing home.

The social worker is the decision maker. Sure, she can ask advice, that’s no bad thing. But she cannot delegate the decision making to my colleague.

A few months ago, we had a request from a social worker in another team to assess the capacity of someone who had dementia to make a will.  The referral came to the team meeting and was summarily dismissed with a ‘the solicitor has to do that’ remark. It seemed counterintuitive at the time but the Code of Practice is very clear about this. (MCA COP 4.38 – 4.43)

The person making the assessment as to whether capacity exists has to be the person on the ground who is suggesting (or not) that action that is to be taken.

Those are some fairly straightforward examples. Sometimes it is a much more difficult place to be.

There is someone I’m working with at the moment who lives at home. There are proverbial risks hanging from every corner of the house. I can’t even begin to recount them! She has been agreed for residential care. She has  family who take an interest who find they are constantly worrying about her and want her to move to a residential care home nearer to them although, they tell me with slight reservation, she always said she would rather die at home than go to a residential care home.

I’d like to devolve the responsibility of my decision to someone else. Really I would. I sometimes see my caseloads play out on the imaginary front pages of the Daily Mail or the Sun.

After completing my capacity assessment (I’ll come to the details of that tomorrow), I surmise that no, she does not have the capacity to make a decision about her needs regarding her residence.

That doesn’t mean that I then ship her off to a residential home even though she doesn’t want to go though.

My decision takes into account the risks and the strength of feeling that she wants to be at home and her utter and complete distress at mentioning residential care.

She remains in the community with increased support and every time I see her my heart is in my mouth.

I wish someone else would make the ‘decision’ but while other people can inform and support me with it – just as I said to the GP – it is my responsibility.

Other decisions I might have made have been with the input and support of an advocate (Independent Mental Capacity Act Advocate has a formal role – which again, I’ll come to later in the week) but they don’t make a decision for me. I am not bound by their advice (although I’ve never gone against it!) but at the end it is advice to help me make a decision – not make a decision for me.

To make a decision there has to be a reasonable belief that a person lacks capacity. There are some indicators about what form and what steps should be taken during this process but as a professional being asked to make decisions, the most important thing that has been drilled into me is to ensure that I record clearly the reasoning behind my assessment and my decision.

We have some very good forms (I don’t say that very often!) that we use when we are carrying out these Capacity Assessments which really take us through the process and the legal requirements on a step by step basis and form their own record and reasoning.

But I’ll come back to the process tomorrow.

In the meantime it is important to remember that the Mental Capacity Act is a document that protects the service user/patient/all of us.

Someone doesn’t lack capacity just because they don’t agree with the professional decisions made around and about them just as they don’t suddenly have capacity just because they agree to do what they are told.

Making decisions about other people’s live – especially very significant decisions – isn’t always a comfortable place to be – but the mantra of best interests needs to be playing in the background of our heads along with the very basic tenet of ‘what would this person want if they didn’t lack capacity?’.

The answer isn’t the same as ‘what would I want if I lacked capacity’ or ‘what would their family want for them?’  Sometimes it is but that isn’t necessarily the default position. Yes, of course family and friends must be consulted. As good a picture as possible must be created of that person’s life, aspirations and hopes. Often it is the same as the people around them who love them most.

It must though always be a very transparent decision that, if challenged, can be defended. To the Court of Protection if necessary although lets hope it never is!

It’s a lot of responsibility at times but legally it can’t be shirked.

Making the call

The most difficult decisions that I am faced with, and it hasn’t happened frequently, is when I am carrying out a Mental Health Act Assessment and have two signed medical recommendations in my hand and have to make a decision whether to admit or not.

Sometimes it is a very straightforward decision. The history, the presentation indicate that there is very little choice.

When I was training one thing that was instilled in our minds was that when you make that decision with an older patient, it can be unlikely that they will ever return home again as often the outcome of hospitalisation is residential placement. It doesn’t always happen this way but it is a common outcome.

I was faced with one of these decisions recently. It involved Mrs N who has dementia. She has refused any kind of care services at home – but, to cut a long story short, she needs some help. More than some – a fair amount actually. She immigrated to the UK decades ago with her husband. She is now widowed and has no family in this country.

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She believes her husband is still alive. She talks to him. A placement had been arranged for her a few months back but when the moving time came, she refused to go because she did not want to leave her husband.

The risk and concerns come from her wanderings in the local area into the evening. She also seems to be switching her fridge and freezer off at times which leads to an excess of rotten/rotting food in the kitchen and concerns about what she is eating.

I attended the assessment and the medical recommendations were forthcoming but something felt very uncomfortable and I did not make the application.  I suppose this has made me more conscious about ‘making mistakes’ in practice.

I spoke to her care co-coordinator and she put in a care package. It wasn’t a very conventional package of care and something that would never have been permitted in any previous role I had worked in.

We put in a couple of hours a day with a good local agency – not to do any particular ‘care work’ but to come in and sit with her and chat with her and get to know her. Also to keep an eye on her because the times that she ‘went out for a walk’ in the evenings were pretty well-known. This happened to be the same times that we sent someone round to her home.  Is it restricting her liberty to send someone to her home at the time she likes to go out and sweet talk her into staying and having a cup of tea? Most likely –  but it is less restrictive that being on a hospital ward.

I have, when permitted, used this before as a ‘way in’ to providing a service when people are reluctant – but usually I have only been allowed to authorise very short visits for the purpose – 30 mins max. This time it is a much longer period of time that we have made provision for. I wouldn’t like a complete stranger to be coming in and providing personal care to me so having a little ‘bedding in’ time can be a good way of getting a service through the door.

Once the carer is accepted, services can increase. One carer can introduce a colleague and so although there is no elimination of risk – the balance between risk and choice, even in the face of lack of capacity can be balanced.

I’m not saying things are perfect – it’s still a matter of us crossing our fingers and hoping things work out for Mrs N – but it feels that at least we have been able to make more of an effort for her before pulling her out of her home and causing no little amount of stress and distress.

It might not work – anything can happen – we could be presented with the newspapers at my door if Mrs N does come to harm. I am also fortunate that in my current setting, my managers will allow more flexibility with care packages if I can make a good argument and honestly, day time care at home is almost always cheaper than hospital care or residential care. I think though, and I don’t want to second guess outcomes, it does show how more funding can allow more flexible approaches to be taken on a very real level.

Reviewing IMCAs

Yesterday the First Annual Report of the Independent Mental Capacity Advocate (IMCA)  was published. I have had some experiences of using IMCAs over the last 18 months but with increasing frequency and it’s probably the same for most of my colleagues within the service I currently work in.

The role of the IMCA was created by the Mental Capacity Act to provide a statutory advocacy service to someone who lacks mental capacity when serious decisions are made. The referral to an IMCA is mandatory in two circumstances

– Where serious medical treatment is considered

– Where a move or change to long term accommodation

and it may be used

– in adult protection proceedings

– Care reviews

With the exception of Adult protection, the service is aimed at those without family or friends to provide this support or voice.

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Physician treating a patient. Red-figure Attic...

In our team we’ve made some use of the services available to us and built up some good working relationships with our IMCA service but some of the results are curious all the same.

To summarize very basically, the most common types of referrals seem to be regarding long term care placements – which is wholly unsurprising to me, at least, as that’s the most common reason that I’ve made referrals.

The report though states that referrals for serious medical treatment is lower than expected. Stating that

Six hundred and seventy five people were referred to the IMCA service for representation in relation to serious medical treatment in England during the year April 2007-March 2008. This is an average of four and half cases per PCT in a year – or one every three months

Rather damningly, the reasons proposed were as follows

i Some doctors do not understand that there is a statutory duty to make referrals. They perceive it as discretionary.
ii Some doctors do not agree with the statutory duty to make referrals. They choose to disregard it

With some IMCAs claiming that they were disregarded as some doctors felt that a non-medical person having input into a medical decision was ‘a waste of time’.  Clearly an area in which further awareness and input needs to be concentrated.

Most IMCAs were positive about the input that they were able to provide and sufficiently confident that it was a new service and something in addition to other advocacy services or social work services who might have an advocacy role but have other demands.

One of the interesting cases given, an IMCA explains that they were able to find distant family of an individual merely because they had had hours to be able to investigate and go back through notes – something a professional might not have  had time to be able to do.

Another exercise as a part of the review that the IMCAs were asked to do was to sum up their role. Many of them had been advocates prior to the new legislation and they claimed that the Mental Capacity Act had given them more power to ask questions on behalf of the people that they were advocating for – after all, their role is now legally entrenched. However they also claimed a powerlessness as ultimately their role is an advisory one and the decision-maker is still the decision-maker.

Personally I’ve found the IMCA reports provided to be useful for me to push my own commissioning and finance managers to provide care needed for an individual. In one situation, I discussed the recommendations that an IMCA made and it included the provision of a service that didn’t actually exist in our local authority – but by taking the report to our funding panel, I was able to point this out, markedly and explain that it was a poor reflection on our services that we were not able to meet the needs presented by an IMCA.

There are some interesting statistics at the end of the report which break down the referrals and decisions by month, need, decision type, ethnicity and finally a council-by-council breakdown of how many referrals were made.

I’m not sure if it’s the first time that an advocacy service has actually been created by legislation, I’d venture a guess that it is – but it won’t be the last time.

Indeed, the new Independent Mental Health Advocates created by the 2007 Mental Health Act can probably learn a great deal from the experiences of some of the IMCAs already in place.

One step at a time and moving, at least, in the right direction.