Welfare Bill and Ongoing Support

As a carer for a wife with a mental illness, I knew that life would change for both of us… I also knew it was not going to be easy. It was not going to be easy for me, not easy for my wife.

Now, there is an understatement for you!!! I couldn’t believe just how hard it was going to be for both of us, and all the family, all our friends… so called friends, they tended to run away. Friends I am making now however are of a different sort… they know the situation we are in, they accept it, as I accept their situations… with compassion, understanding and no little humility… there are people suffering beyond my wildest imagination, and my heart is with every one of them.

Sadly, I don’t think that the people who are supposed to be looking after vulnerable people see it that way. They seem to see mental health patients and carers, the most vulnerable of people, as an easy target to neglect, abuse, punish and cast away as an old dress.

Locally, the Adult Mental Health Service are designing a new Acute Care Pathway, defining how people should be treated from initial diagnosis through all aspects of the Service, both as an in-patient and a n out-patient. I have to say that the pathway has a lot to commend it, the Trust is making great efforts to understand patient and carer requirements from the service, and I believe that once finalised this Acute Pathway will make a huge difference to all of us, will be a major step forward.

At least, that is the theory, I genuinely believe that the Adult Mental Health Trust is trying to understand its shortcomings, trying to work to put them right, and you have to commend them for that, but, as they say, the proof of the pudding will be in the eating.

They can only achieve their goals if they have the resources to do so, and increasingly, that is simply not the case.

In my local Trust there are simply not enough acute beds to cater for the demand, to counter this problem, they encourage carers to take patients out on day release, weekend release, and when they come back someone else has taken their bed, which means the patient cannot return to the ward. If they are lucky they will find a bed elsewhere within the Trust, which means turning out someone who may already feel rejected, confused, lost… it is hardly in their interest to be shuffled out is it?

The alternative is for the carer to take them home again… but does the NHS check if the carer is able to do so… what do you do if you simply can’t cope with having them home overnight, or for an extra night… it is a hell of a strain on the carer. Then to be asked, in front of the loved one, can’t you take her home again tonight?. What can you say… it is emotional blackmail and you have no choice but to pay the ransom.

Once discharged, the patient will need support, will need somewhere to go to help to reintegrate into society. The day centres are closing, the support services are losing funding, along with the rest of the world are suffering cuts, and like most organisations, the easiest commodity to lose is staff… not cut out the waste within the service, then adjust the further cuts based on that. This means that the support, who already have case books too large to deal with them effectively have to take on even more, reducing there efficacy even more… not their fault by any means… but they are the front line, so they get the blame.

As for respite care for the carer… well, if you are really lucky you can get 8 hours a week, 2 half days. It is already a monumental task for a carer to look after someone with mental illness, but if you have to cope around the clock, seven days a week, it quickly grinds you into the ground… I have seen too many carers become service users because of this situation. Of course this is an additional cost to the NHS, probably far more expensive than employing the people needed to look after the original patient to start with, and of course someone still has to care for the original patient.

I am delighted that the Adult Mental Health Service is bending over backwards to understand and accommodate improvement, nothing but credit for them, my fear is that ill-advised cuts instigated by a government who seem intent on punishing the most vulnerable will prevent them achjieving their aims, and make the situation even worse for carers and their loved ones.

Once again the blame will fall on the local health trust, but in our case they are doing so much to improve things, but it seems they are going to be thwarted for a political expedience… This cannot be acceptable

On-Going Care Plans

Sometimes when I get angry, it is a totally different subject I get wound up about and write about… but this isn’t one of them.

In January 2010 my wife had been in an Acute Psycjhaitric Ward for four months suffering with acute psychotic depression, and then was allowed home on home leave over Christmas and extended into New Year. We had a ward round and she was discharged, no preamble, no discussion, just you are discharged.

The consultant also said if we had any problems we could get support from both the Community Unit and the Acute ward she was being discharged from

If I had known then what I know now, things would have been different, my wife may not now be in the desperate state she is now in, because she may have got the proper help at the right time.

What do I mean by that… like many carers I didn’t know there should be an agreed, documented Care Action Plan detailing on-going treatment and support in the community.

As it was we had an occasional visit from a CPN, and an outpatient appointment with a junior doctor.

The CPN was so understanding, phoned my wife to say I am cancelling my appointment as I’ve spent longer with someone else than I meant to… now I understand spending longer with a patient when needed, but phining someone with depression and saying effectively “I haven’t got time for you” is not exactly good care practice.

The junior doctor changed her prescription and gave us a month’s worth. They arranged to let our GP know so we could collect the next one from them rather than from out-patients. We collected the next prescription a month later and guess what… the new details hadn’t been passed on.

The outpatient people wondered why we were annoyed, 4 weeks is not long enough to let the GP know, it normally takes up to 7 weeks. I will not comment on that. As my wife was taking 20 tablets a day at that point, tablets for 28 days amounts to 560 tablets.. all of which had to be flushed down the loo while we went to outpatients to get the correct prescription.

At this stage my wife started having seizures, they terrified me, it was awful, I couldn’t do anything, she was in a state like that for 6, 7 hours at a time, almost daily.

I asked for help, begged for help…. The crisis team said, while we were in crisis , don’t worry, we’ll be coming in a couple of days anyway. Social worker said “if she’s that bad, I wont come, you can see doctor next week”,  CPN said “I’m busy” Community Centre said thar it was nothing to do with them, so go away. The acute psychiatric ward said the same, but said go to A&E, at A&E we waited nearly 8 hours to see a psychiatric doctor, who simply gave me a bollocking for wasting her time

So much for support…

At the end of February now, and I got angry with the Doctor and Manager of the Community place… ranted… there response was to do nothing but write the Care Plan then, showing all the services we should have had but were never offered, as though they had been put in place from day 1. They expected my wife to sign it despite the fact she didn’t remember what happened the previous day at that time… let alone six weeks earlier. They expected me to sign it despite the fact it was total bollocks, even had date of birth and date of admission wrong… that caused a bit of a fuss!!!

So, you ask, why am I so bloody angry about this today, two years after the events, well, I’ll tell you.

Last weekend my friends mother had a stroke, was admitted to hospital to be checked and presumably restored. She was discharged next day, discharged to home where she couldn’t get up and down stairs, couldn’t prepare food or drinks, wouldn’t eat or drink, needed around the clock support, but her daughter and son-in-law had jobs to do, and couldn’t be there around the clock… oh, of course no asking if discharge was practical or achievable, it was assumed…. So home she went, and the carers were again put under unreasonable pressure to do the work that the NHS should be doing. Incidentally official figures show that Carers save the NHS £118 billion per annum. Wouldn’t that alone justify treating them with some respect… apparently not.

Suffice it to say, that the next day she had a fall, broke a wrist and was taken to A&E, where she continued to be treated for a broken wrist despite having another, bigger stroke at the time. Eventually the family persuaded the staff that she had had a stroke and dealt with  it, at the expense of treating the wrist

She was readmitted and despite the fact that the two strokes were barely more than 24 hours apart, there was apparently no connection between the two, presumably justifying the early discharge without checking the situation she was being discharged into.

Whilst in hospital, the lady was catheterised but was in pain. The family told the staff that she was prone to water infections, and eventually persuaded them to check. The staff confirmed a water infection.

So, here is my point, two years apart, two incidents where a patient was discharged without an acceptable care plan, without even advising the carers that a care plan was required, in both cases the patient suffered further and more damaging problems.

Two cases where discharge was ill considered, contrary to the needs of the patient and carer, and with no credible support available for anyone.

If anyone thinks these two incidents are unique, you are being either naive or ridiculous, with the number of such cases I have been told about, it would appear to be virtually standard practice

It is a disgraceful, damaging, callous process, aimed I imagine, at massaging statistic to fit the governments ill-considered standards. Another statistical game played at the expense of the patient and carer, who are simply commodities, statistics to falsely prove the achievement of statistics, nothing to do with care or support of vulnerable people

This kind of behaviour by the NHS is totally unacceptable, it is damaging to patient and carer and will lead to carers being admitted as patients though exhaustion or stress.

The forthcoming cuts will save the NHS money in the short term, but as services deteriorate even further, more people will be readmitted with more serious conditions than before, more carers will be so worn, stressed and exhausted that they will become service usaers themselves, adding even more costs to the NHS, more competition for beds and services, and the spiral will continue, deteriorating rapidly on a daily basis.

We cannot sit back and let this happen… fight all the way to prevent the cuts impacting even harder on vulnerable patients and carers…. We have not asked to be in this position and surely deserve more respect and better support than is currently provided, let alone when it is reduced further by the cuts.