Fighting Monsters

So, a week from the start of my journey into a Direct Payments referral and I have sent the appropriate forms, documents and paperwork to the appropriate people.  The figures are being checked and the amount that has been requested matched up against  the Fair Access to Care criteria along with a brief (at this stage) breakdown of what each minute paid will be used for.

As is ironic the person to whom I sent them is  on holiday - but this is not ‘urgent’ so it will wait. I doubt that a week or two will make much difference in the long run. So possibly no update next week!

I have asked the daughter to open a separate bank account for her mother - I like to get this done as quickly as possible. We have some pro-forma letters to send to banks to request that the facilitate the opening of a bank account and don’t perhaps, use the usual criteria that used to make opening a bank account quite difficult for some users. The letter is a result of some consultations between the council and the banks.

The Consumerist at Flickr

We also had a very very brief chat about the process of employing a carer.

As for the Carers DP, that has a different path for authorisation. I updated the Carers Care Plan and Assessment sent it to someone else who coordinates carers services to request payments.

Meanwhile, in a somewhat timely manner, The Social Work Blog writes about a GSCC consultation regarding the regulation of personal assistants who are employed by users of Direct Payments.

Up till now, employees of Direct Payments users have not been required to have the Criminal Records Bureau checks required of all over professionals in the social care sector.

This was partly to allow for a more flexible approach to be taken to employments by users and to cut through some of the ‘red tape’ that might prevent users from employing whoever they want.

Personally, I think that’s all very well for some users who are able to  manage and organise the direct payments but for me, it adds another layer to the barrier to being able to wholeheartedly run with direct payments when working with a more vulnerable user group - particularly, I’m thinking of older people.

I have to claim having a slight vested interest in the debate.

My father is uses direct payments and employs carers directly - he has had directly provided services (without too many details, he has been a user of social services care for many years) and he now has, and has had a direct payments care package for a number of years.

He has currently and has been lucky to have almost consistently, a number of exceptional carers - some of whom I’d like to poach for service users that I work with, but I don’t think he’d forgive me!

But I want to know that he has safe carers. That it isn’t a case that anyone can look at an advert in a newsagent and reply and be working in the home of a vulnerable elderly (sorry dad!) person within days.

Sometimes when I’m at work, people might see me as a detached professional without possibly knowing that I have had quite a lot of experience as an indirect recipient the other end.

And that’s what  I mean when I judge the services I provide against ‘Would I want my dad to go here/get this/have this service?’ It isn’t quite as theoretical a question as it might sound..

I work in the inner city and have since I did my first practice placement in the first year of my social work course almost 10 years ago now.  For as long as I have been working as a social worker , I have only ever worked in the inner city - different parts of it granted but its what I’m used to and what I know.

While most of the work is in the overcrowded tower blocks that circle the main business districts and higher class shopping areas of the city - neither mental  illness nor old age spare any income bracket or social class.

So yesterday, I found myself in a house that I had to seriously brace myself before entering - and not in the way I’m accustomed to. I am no estate agent, but the size and location would put a fair multi-million estimate on the property.

Inside though, the issues, pain and confusion were the same as those I see in the high rises that are less than a mile away.

Mr A has dementia and goes for his walk in the local area. Mrs A lives with the fear that every time he goes out he won’t be able to find his way home or he gets on buses and ends up the other side of the city.

She surruptiously (as he won’t tolerate identity bracelets or pendants) sticks a label with his name and address on the inside of his jacket when he leaves - just in case. Every day.

They are and have been a very close couple. Now, Mr A won’t see anyone else. I got in because I said I work with the doctor (who had been to assess him previously and asked me to follow up)

Mr A with his confusion is still of an age that equates ‘what the doctor says’ as being irrefutable.

But Mr A won’t let his family visit anymore. He doesn’t like Mrs A going out without him and she doesn’t like leaving him alone.

She told me about the loneliness she felt. Not being able to have her family visit. She told me of a completely different Mr A before the dementia  had taken hold who used to love chatting with his daughters and having the grandchildren and great-grandchildren come to play in the garden.

She wanted him back but over the years had become resigned to the reality of the current situation.

Now, she just wanted to a break.

When I explained to her about the provisions of regular residential respite care she almost snatched my hand off. I ran through a list of the local carers groups and user-led groups that I felt would be helpful. Possibilities of practical things that could be done and help that could be offered.

We ran through the possibilities of domiciliary respite care (where someone comes into the home and provides a sitting service)  and various telecare devices which can provide some reassurance.

This is a situation that is far from uncommon for me and often, when I visit following a medical assessment or diagnosis of dementia, I will be the first ‘face’ of social care than a family have ever been presented with.

And as I was talking, I was aware of my own assumptions - going into a truly palatial home isn’t what I am used to. Perhaps I used to make more assumptions about the way people live and what needs are there.

But really, the work is exactly the same. The needs are still there and the pain and confusion is still there.

I know I wasn’t really expecting it any other way, but sometimes when you walk through those kinds of houses in those kinds of areas and you glance into the windows and wonder what it would be like to live  that way, usually with some wistfulness  - the people inside the houses do live, breathe, worry and feel in the same way - they get old and grow ill in the same ways.

They just probably don’t have to make the judgements about the loaf of bread or the extra winter heating so often…

Direct Payments is the system of, basically, rather than giving a direct service, providing money to the user of the service to ‘buy’ the care that they need directly.

‘Direct Payments were introduced in the UK

- for adults with a disability in 1997

- for older people in 2000

- for carers, parents of disabled children and for 16 and 17 year olds in 2001

Since 2003, councils have been required to make Direct Payments available to those who are able to choose to have them and who wish to have them’

(Source : Direct Payments for people with mental health problems: A guide to action)

I have worked with Direct Payments a few times although it isn’t something that comes up with any great regularity in the field that I am currently working in - mostly because, I imagine, my work is focused on a combination for the two groups of service users who have found the system of direct payments least accessible - older people and people with mental illnesses.

So working in a team for older people with mental health problems seems to be possibly the least likely place for direct payments to be accessed.

I have instigated a few direct payments packages but not a many. One of the things that I have found the most frustrating is the time-lag between going in to someone and identifying a support need - offering and explaining direct payments alongside an explanation of the direct provision of services.

On meeting potential interest, the boxes get ticked but in the meantime the service is needed immediately - it can and  has taken months to get a direct payment service up and running but in the meantime a direct service is needed to meet the need that still exists - sometimes a carer is employed in the meantime with whom the patient gets on very well - seeing no need to change to direct payments after a few months of building up a relationship.

Sometimes the  delay between setting up a ‘new’ system leads to a complacency to fall back to the ‘default’ system.

But sometimes, occasionally, it has followed through.

I have two reasons for bringing this up at the moment

Firstly, I am starting the process of referring someone for direct payments and her daughter for carers direct payments.

I thought it would be a useful illustration of the time it between someone deciding they need a service to its eventual ‘fruition’ if I can follow it here by indicating the different points in the process as they arise.

I hope I will be proved wrong and that we can get things up and running quickly. I really do.

Bit of brief background, service user and potential user of direct payments has an Alzheimer’s type dementia. She has had this diagnosis for a couple of years and can function fairly well. On meeting her, you probably wouldn’t realise she has dementia until you’ve been talking to her for at least about half an hour when some of the conversation begins to repeat itself. She would certainly have the capacity at present to make decisions about her own care and support packages.

She has been receiving a directly provided care package for a while but some of the elements have proved to be less than satisfactory. She doesn’t enjoy the day services on offer and would probably get more from community activities such as tai chi classes at the local leisure centre. One of the ideas of the direct payments is to look at someone to take her to these kinds of activities rather than her going to the local community day centre.

Her daughter is her main carer and lives locally but not walking distance. Her daughter has a young family and provides a substantial amount of emotional support to her mother, visiting most days and taking her mother to stay with her family many weekends.

I’m hoping that Carers Direct Payments will be able to address some of her needs regarding travel costs between the two houses and possibly some of the domestic care.

It’s been a while since I referred a Direct Payment care package so I called the Direct Payment lead (who I get on well with anyway and always find it easy to talk to) to confirm the procedure to refer.

I sent her an initial care schedule with costings and times attached.

Meanwhile, on the ‘Carer’s’ front, I need still (and hope to today) update the most recent Carers Assessment and Carers Care Plan to include the conversation I had with daughter to include Direct Payments for Carers as an outcome.

Anyway, lets see together how long it takes to get these things up and running..

This week is Carers Week. There has been quite widespread coverage in the press - certainly from where I’m sitting anyway. Yesterday the government printed its 10 year Strategy for Carers.

It has been widely reported that the main tenet of the strategy published - as far as I could tell from the reporting of it  as I haven’t actually had time to read it yet, was a Government pledge to increase spending on

Respite care (£150m)

Support for return to work and training and general work/life balancing health checks(£38m)

Training for GPs to raise awareness of Carers’ Health and Input from Voluntary Organisations (£61m)

Focus of young carers (£6m)

Which adds up to the total £255m injection into carers’ services in total.

More money is better than no money. A recent survey, carried out to coincide with Carers’ Week suggests that

‘ a large majority of carers admit to feeling ill, anxious or exhausted, with a staggering 95% of those questioned said they regularly cover up or disguise the fact that their health was suffering in order to continue with their caring responsibilities. Worryingly, one-fifth (19%) of these carers said they ignored feeling ill “all the time”.

Almost 1 in 4 (24%) of carers say they frequently felt unable to cope with their day-to-day duties due to the physical and emotional stresses of their caring role, and a further 64% said they were occasionally unable to cope.’

So pushing finance into a focus on Carers’ own health is a positive step.

Flexible working patterns are, as well, important. I know that some employers are more sympathetic than others to time being taken for caring duties and some kind of statutory guidance that would provide more protection to Carers would be helpful.

Alison Benjamin on The Guardian website sums up some of the responses from the main voluntary organisations which work in the field.

She writes about a scheme of ‘Caring Vouchers’ which has been advocated by leading charities and some larger employers to work in a similar way to childcare vouchers - allowing for services relating to care, podiatry is given as an example, to be purchased with these vouchers.

But these are some of the elements missing from the strategy.

Rethink approaches some of the proposals from a different angle asking

‘What does £15 pounds buy you?’

Noting that dividing the £150m set aside for ‘Respite’ breaks by the amount of carers in the UK doesn’t exactly make for extensive holiday breaks.

But it won’t be £15 each because some people will never claim holidays or respite they are entitled. My difficulty at work has been more trying to desperately convince people to take those breaks that they are entitled to and that they can access money for.

Where I work, there is a fairly substantial pot of money which has been put aside specifically for carers breaks. It is consistently used by the same groups of people which isn’t a problem because there is always some money in the pot as others are so reluctant to consider using it.

Strangely, the existence of money to go away isn’t the issue - it is persuading people to access it.

I work primarily with older people and older carers so I can’t speak more generally, but often, regardless of the amount of stress, time and health concerns, they do not want to leave their partner in a residential home for a week while they go away.

I hope there is more access to creative options for respite such as allowing (paying) for someone to come and allow respite in the home. But the costs of that would, I fear, skyrocket far past £150m.

Bert 2332 @ flickr

The other major criticism of the strategy drawn out by Alison Benjamin is the lack of any revised approach to Carers Allowance.

‘The most glaring omission from the government’s strategy is any proposal to increase the carers’ allowance or provide additional financial assistance to carers who are struggling to make ends meet. Although their role is estimated to save the state £87bn a year, many are living on just over £50 a week, plus other meagre benefits.’

And it is an embarrassing and humiliating attempt at piecing together a so-called ‘benefit’. Perhaps some more money for carers directly, rather than vouchers or health checks or training of GPs would have a more immediate effect quickly.

Of course, throwing money at problems is hardly the most creative approach but the Carers Allowance, is one of the worst examples of a poorly thought out benefits system that is insulting to those who jump through enough hoops to be able to claim it.

My own fear, and granted this is a result of reading the press rather than the actual strategy itself, is that the focus will be on those, again, who can ask for help and who shout for it when necessary. Those who are the ’silent carers’, who need more time, money and outreach may be missed in the floods of additional funding trickling through the system. But I’m hoping to be proved wrong!

I first saw on the news over the weekend about the report produced by the Institute for Public Policy Research related to  Personalised Budgets for Carers and it baffled me a little bit.

Don’t get me wrong, I completely think that carers need, deserve and are entitled to a lot more support than is available presently.

The Carers Allowance is, quite frankly, an insult to those who put in so many hours and whose lives are changed by the amount of care that is put in (as well as, on a less emotive level, the amount of money that is saved by both the NHS and Social Services). Also (for what its worth) it’s linked to Disability Living Allowance/Attendance Allowance and is means-tested. All of which contribute to its inefficiency.

But the call for personalised budgets seems to be, as far as I can garner, more or less the same as Direct Payments for Carers - which is explained much better on the Worcestershire County Council site (thank you, Worcestershire - and no, I don’t work there - actually, I don’t think I’ve ever been there!) as follows

‘Support for Carers

A Direct Payment can be provided to enable family and informal carers to purchase the services they are assessed as needing as carers to support them and to maintain their own health and well-being.

A Carers Assessment and Support Plan should be completed to identify the impact of caring on the person’s life along with the support they require to continue caring or to take a break from their caring role.

Carers are able to use Direct Payments to purchase support in any variety of ways including:

• Short breaks for themselves and/or the people they care for;
• Personal assistance within the home;
• Sitting services;
• Social, education and leisure activities;
• Transport costs;
• Equipment
• Relaxation, stress management and holistic therapies.

Some of the intended outcomes of using Direct Payments for carers are:

• Promoting social inclusion through greater opportunities for carers to actively participate in family and community life;
• Greater opportunities for the personal development of carers;
• Promotion of the carer’s health, well-being and coping skills;
• More responsive, timely and consistent methods of providing support, with greater opportunities for creativity;
• Values the essential contribution carers make to family life and the wider community.

Under the service, young people, aged 16-to17-years, are also eligible to receive Direct Payments to support them in their role as young carers and to minimise any difficulties or isolation they may experience in undertaking their caring responsibilities’.

psd @ flickr

I have to say I like the direct payment scheme as it works for carers because it is incredibly flexible. Indeed, I’d say it is the easiest way to provide direct support to carers and in the most visible way - so I’ve got a fair amount of experience using it.

In a lot of ways, it is a lot more flexible than the direct payments provided for service users because it can be used for ‘anything that would support the carer’ - so gym membership, travel costs, parking costs, washing machines - there is the ability to be much more creative. ‘

And it exists now - today and has been used with frequency.

So that’s why I didn’t really understand the call by the IPPR for personalised budgets with no comment about what is actually happening in social services departments to support carers today. Maybe they are calling for more money to be a part of the personalised budgets (a good thing) or more control (although the control can be basically in the hands of the carer themselves), more exposure to issues that matter to carers or less scrutiny from local authorities who provide the funding.

I suppose I’ll have to actually read the whole report rather than just the reporting of it!

I noticed that Sophie Moullin from the IPPR wrote about this in the Guardian and from what she says, I can’t see any difference in the new system she proposes to what is actually, legislatively in place at the moment.

I am absolutely in favour of anything that will help though and if the proposed system will ringfence more money or provide more exposure or utilisation of services then I’m the first person to applaud it.

But to promote the new system which has a lot of links with Carers’ Direct Payments without discussing the failings of that particular system and to look at the issue as if this system didn’t exist, seems not to be giving a true picture of the situation as it is today. Perhaps more needs to actually be done to increase awareness of the system as it exists today and promote use and access to it.

The Guardian published an article this week about the germination of a New Deal for Carers and the results of the consultations that they ran over a period of a couple of months.

I hadn’t known this had been going on so thought I’d look at some of the interim findings regarding the challenges faced by carers.

1. Poor Information. There seemed to be a kind of dichotomy between people being bombarded with not-necessarily-relevant information (I presume, bundles of pre-printed leaflets and telephone numbers) and not being given enough or feeling that they had to ask specific questions in order to get the ‘results’.
2. Postcode Lottery - Without centrally provided or determined resources (and even with - to a certain extent) services will always have a different kind of provision in different areas. I’ve also found it can change very much from worker to worker - not necessarily the actual provision but the quality of service definitely. I know some people are more forthright in offering Carers Assessments than others (who might carry out their statutory duties by offering them but sometimes without explanations of their benefits).
3. Inconsistencies of Care. I think this is an issue across the board and not restricted to carers solely. The report offers the existence of a body similar to CSCI to monitor care workers but as most agencies are inspected by them anyway, I’m not sure that would make a difference.
4. Cohesion between services. Carers have a perception that ’services are centred around the needs of professionals’. Services are not necessarily well-coordinated. I wonder who the professionals are that are creating this perception of inflexibility and inertia. I think carers services (particularly with carers direct payments) have a lot of scope to be extremely creative but it takes time - like everything. Services really do need to set priorities.
5. Delay in the provision of services. This, I’ve seen, and been a part of many times. Sometimes the wheels can and should move into place earlier. Everytime something is attempted that is a bit ‘different’ or more personalised, it seems to take longer to set up or to get approval for. There is no logical reason that this should happen.
6. Bureaucracy. It’s everywhere and is inescapable. Forms and pieces of paper flow like a stream from every source. I think, in a way, targets are not as helpful as management imagine them to be.
7. Recognition of carer status. I think clearly this is something that potentially can change immediately and should be happening for the most part, in that carers’ are the experts on care for the cared for person and should be approached as such by professionals. It doesn’t always happen but it is something that can definitely be provided more concretely.
8. Attitudes of others. This is linked, I think, to the recognition of status. Sometimes it is ignorance that makes people dismissive of carers or just the knowledge that the familial ties make it more awkward to ask directly for help.
9. Lack of opportunities. An understanding employer can make a big difference but only to a point. I think there needs to be more motivation - forcible if necessary, which will point people in the ‘right’ direction.
10. Financial impact. Carers Allowance is laughable and an embarrassment to the government in my opinion. I am almost ashamed to mention it except that I believe it is an absolute entitlement. There are so many completely illogical aspects of the benefit system that seem to work against some sections of people but the treatment of carers is one of the most glaring omissions.

So out of these, some things that I think can change immediately

• - Professional attitudes to carers as experts

• - Information being personalised rather than just pushing leaflets and telephone numbers to people

• - Promoting more flexible means of providing support (Carer’s Direct Payments, Holiday Funds).

• - Building work with carers into the ‘targets’. Currently, where I work any time spent on carer support isn’t ‘logged’ as work completed. It sounds idiotic but each ‘piece of work’ is monitored so if carer support work isn’t monitored, it is definitely not prioritised.

Future possibilities:

• - Benefit reform - it has to come. It is a pathetic excuse for a benefit that benefits very few and many many more should be entitled to more money.

• - Carer Key Worker - not necessarily the same worker who is allocated to the person being cared for. Sometimes needs can overlap when they need to be separated.

• - One point of contact - for professionals as well as carers! Sometimes it can be incredibly difficult to set up what should be a basic service because of additional hoops to jump through.

• - Acknowledgement, support and assistance for carers who might be marginalised by mainstream support services. Support must be provided on an outreach basis as I know many carers who are more or less restricted to their own home. Sometimes some of the ethos of assertive outreach can be applied to carers who might be ashamed or embarrassed to ask for help.

• - Clearer expectations on a national level. There will always be some differences in provision between local authorities but there must be a minimum standard expected.

This tragic story about a man with learning disabilities and his mother who were both found dead left me with a couple of thoughts.

Obviously it is an enormous tragedy and apart from speculation there are few facts available.

My thought though was on the comment that he had stopped going to his day centre about a year ago and this had not been picked up by Social Workers or at least not followed up.

Firstly, it must be awful to carry any kind of feeling of responsibility in those circumstances and there will always be things that one can have wished to have done retrospectively.

To me, it highlights the importance of regular reviews of carers, even if, and especially if no paid packages of care are involved. Often the focus from the councils is on reviewing to save money or to ensure that money is appropriately spent - but it is the carers without services who do, perhaps, need the most support.

Judging from media reports, this man needed considerable support and although it is an individual case and not everyone can know the circumstances - I think it paints a tragic but exceptionally important picture of the role and support that must be offered to carers.

I remember from some of my own work, some of more satisfying moments have been being able to provide carers support. Sometimes it is just a matter of going in and talking to someone who is taking a lot on themselves because they don’t want to discharge any kind of responsibility for caring for their loved one. But sometimes, it is about preventing burn-out and checking that there is no abuse of vulnerable adults.

All I can say, and say with sadness, is that I’m glad I’m not in the Redditch Learning Disabilities Team at the moment.