Families feel the pain of drug abuse

I’m not saying that when ER finished it left a hole in my life, but it did leave a gap in my self-imposed quota of only watching one TV series at a time (Channel 4 News does not count). But with perfect timing, BBC started showing the The Wire – a US drama focusing on the Baltimore police and drugs industry. A theme of the third series that finished last night was the terrible costs to communities and society at large caused by drugs. What goes without focus is the cost to the families of drug users. Indeed, you would think that drug users didn’t have any families – not just cases of immaculate conceptions but babies created out of thin air.

Carers in general are often under-recognised but none are more so than carers of people abusing drugs who are often unable to access the same rights and support that other carers can (see my earlier blog on the Equalities Bill). Yet there are nearly 200,000 carers of people abusing substances. It would be folly to remain ignorant of what these carers sacrifice. Thankfully, the UK Drugs Policy Commission is aiming to shed light on these sacrifices and have commissioned research which estimates the total costs that families bear when caring for a drug user – giving up work, higher living costs, having possessions stolen. The Princess Royal Trust for Carers is involved in advising this research and I’ve seen the final figures but have to remain tightlipped until they are published.

The research has brought home to me that is not an ethereal society that bears the brunt of drug use but rather mums, dads, brothers, sisters and even sons and daughters. They are often the forgotten victims amidst this conflict between drugs and society and as a result receive little support when I would bet that research would show that family support has a big influence on drug users going through ‘cold turkey’ successfully. I seem to remember that is was exactly this family support that saved Ewan McGregor in Trainspotting.

When problems appear so big and systemic as the drugs one can, we often forget that solutions can actually be found at the individual or family level. People can beat the system; support families to help drug users and you may find that more people can get out of ‘The Game’.

Take Care
Gordon

Care demands a bigger cake

This week has been a busy one with two key things happening: the joint meeting of the All Party Parliamentary Groups for Carers; Dementia; Disability; Equalities; Ageing and Older People; and Social Care and a roundtable meeting that The Princess Royal Trust for Carers and Crossroads hosted to forge greater joint campaigning between disability and carers groups.

The joint APPG meeting focused on soon to be published Green Paper on Social Care (England only) which is expected to propose that everybody will have an entitlement to social care support if needed but that everybody, except the poorest, will have to pay a sum or make contributions towards this new system. These contributions could be through regular payments during you working life, a lump sum payment on retirement or even a payment taken from your estate on death. If you don’t blow it all in Vegas.

As well as proposing what might be fair to ask people to put into a new social care system, the Green Paper will ask what is fair for us to get out of a new system, and whether this should be the same no matter where you are in England.

The Green Paper is not expected to propose national uniformity compared to the current local authority right to plan and deliver its own services – so Reading can still be different to Newcastle. However, it is expected that the Green Paper will propose a right to ‘portability’, meaning that if you move from Reading to Newcastle, you get to take the exact same support package with you.

Anyway, I could be completely wrong and unfortunately there are little leaks about it, unlike the roofs of Parliament during the thunderstorms on Tuesday evening. Staff were running about taking bins from rooms to place under huge drips in the corridors and I did even see people using umbrellas inside. Unfortunately, not one person was singing in the rain…

To more serious matters of our roundtable discussions with Carers UK, Equality and Human Rights Commission, Mencap and other organisations where cakes were the big talking point. Alas not a cake for my impending birthday, but a reference to the agreement that disability and carers groups should together demand a bigger financial cake for social care, rather than arguing amongst themselves for shares of the same cake.

A Care and Support Alliance has been created and one of its aims will be to argue for social care to receive greater funding and prominence a la the NHS. This had also been discussed at the APPG meeting mentioned above and indeed the Dept of Health hosted Health & Social Care Awards last week (my boss knows how to show me a good time).

However, two things suggest we have a long way to go:
1. At the awards ceremony, most of the awards focused on health rather than social care services which gave a telling indication of priorities.
2. In discussing future spending cuts, both Labour and Conservative parties have sanctified the health service as something untouchable but social care has gone largely unmentioned.

What is it about social care in comparison that we do not value as much? It is because there are no last minute life-saving miracles? Is it because professions in health care are perceived to have greater standing than those connected with social care? Is there a problem with the very term ‘social care’ conjuring up images of Government intervening in social issues rather than assisting the maintenance of people’s health and quality of life? Could it be that we need George Clooney to reprise his Dr Doug Ross role in ER, but instead play an Occupational Therapist in Chorley?

Answers on a postcard please…

Update 15 July: read the Trust’s response to the Care and Support Green Paper

Take Care
Gordon

GPs: share information and improve care

I actually start this week’s blog with something that happened last week – I know, shame on me.

The Health Foundation had invited me to an event on patient access to their records which I ambled along to. There were about forty people there, mainly eminent doctors or professors so I thought listening and not saying anything stupid would be a good start.

Overwhelmingly most thought it was good that people should have access to their own records for two reasons:

• It is information about them so it is right that they have access
• They will take greater care of themselves the more they know about their health

A third reason came to me though. If the patient has control over who can see their information, will this lead to carers getting more information helping them to provide better care and support? Many carers feel that health professionals use confidentiality inappropriately to keep vital information from them that prevents them from giving the care they need to. Some carers say the health professional won’t even talk to them.

In a 2003 survey by Rethink, only 51% of carers said that they did not have regular contact with their health professional and yet only 8% of mental health service users said they did not want their carer to have this contact. Health professionals must ask the question of the patient – “do you have a carer who you would like to receive certain information?” It’s that simple.

After finding the courage to bring this up, a Dr Amir Hannan spoke to me about his work. Whilst the other doctors were agonising how they could make records available to patients, he told me that over 700 of his patients already do. And what’s more, he wants to know how he can help carers get more information.

He took over Dr Harold Shipman’s practice and made it a priority to rebuild trust. He does this by trusting his patients and carers with information and listening to them, and seeing himself as the servant to them. How many carers would love to have such a relationship with their doctor?

Take Care
Gordon

Visit The Princess Royal Trust for Carers website for professionals working with carers

Social care: will carers get choice and control?

We have been waiting for the publication of the Green Paper on Social Care for a few weeks now. I am beginning to think it is like tomorrow – always there but never arrives. The Greater London Authority has a Carers Advisory Group that asked me a few weeks ago to present a summary of the Green Paper to its meeting today. Of course, the damn thing is still not out but of course the show went on and I instead gave some personal thoughts.

Much of the debate focuses on how to fund an expected £6bn plus shortfall in social care funding by 2026 to maintain a creaking care system. It will probably end up involving some form of co-payment system where individuals will have to contribute. However, equally important but less discussed is that the key to maintaining a functioning care system is to support the millions of carers who actually provide the majority of care and support.

Far-sighted people have predicted the number of carers to rise past 9million but we cannot put unreasonable burdens on carers risking their own health and employment, often leading to the carer breaking down. Carers do save the Government billions of pounds, but by being forced to give up work or need healthcare themselves, the Government loses money as well.

The Government has said that choice and control should be principles of any new social care system. But will carers be given the choice and control of how much support they want to and are able to provide? Will carers, and whole families, know what support they are entitled to and what they are giving up if they do decide to become carers?

Currently, many carers do not feel it is a choice that they have made but a life that they were forced into. By properly supporting carers, we could have carers providing the support they want to whilst remaining healthy and active in workplaces and communities. This could mean even greater savings for Government, a more stable social care system and, crucially, happier people.

You never know, maybe the Green Paper is delayed because they are now incorporating these views. If so, sorry about that.

Take Care
Gordon

PS
It was announced in Parliament that The Standing Commission on Carers will place details of the proceedings of its meetings on its website by 31st July