Just to set the context for this article, I need to explain that I am a family carer, looking after my daughter Rowan who will be 22 years old in January 2011. Rowan suffered brain damage at birth due to asphyxia and wasn’t expected to survive. However, here she is today, happy and well, but with a limited range of skills and maybe a different way of understanding the world.

Caring has often – especially in the early days – by necessity, taken over my whole life. Taking care of Rowan and my other two young children, as well as trying to identify and source appropriate services to support Rowan and the rest of the family, can be frustrating and exhausting. At times, as a family carer, it can feel as though life is one long battle and you feel as though you have to shout louder and louder to be heard! Even though my situation has eased as my other two children have grown older and become more independent, as well as able to support me more with Rowan, I am still surprised at the battles I still have to fight. However, Rowan is in her third year at the special residential Hinwick Hall College in Wellingborough, where she is well looked after, has a great curriculum of appropriate activities and is generally very happy.

With 6 million plus people nationally caring for someone close to them – family, friends or neighbours, as well as the increasing likelihood of individuals becoming carers, the previous government put carers high up on their agenda. There is increasing recognition of the significant contribution family carers make to the social care system in this country – not to mention the enormous financial savings for the government when people continue to be cared for at home rather than in, often very expensive, residential care. It is true to say that, without unpaid family carers, the social care system would collapse.

In February (2007) I was visited at home by Gordon Brown, then Chancellor and Ivan Lewis, then Minister for Social Care, when they launched the New Deal for Carers. This visit instigated a nationwide consultation with carers on the part of the Department of Health and Carers organisations, especially Carers UK (see link). Carers were encouraged to “tell it like it is” and, when I was asked to speak about my experiences and achievements in campaigning on behalf of family carers at one such consultation event back in June 2007, I was completely overwhelmed by the number of personal accounts of real hardship, lack of support and genuine suffering which carers and their families were experiencing. In fact, I broke down in the middle of speaking as I was overcome with emotion. Fortunately I had an opportunity to answer some questions later in the session, when I had regained composure.

Sometimes when I look at the state of care in this country and the real poverty in which some people live, as well as the burden of their caring roles, I have to remind myself that this is the 21st century and we are not in the developing world. Having said that, it is true to say that there are individuals and organisations who work very hard to improve the lives of the chronically sick and disabled and their families and others who care for them.

Gordon Brown set up a Standing Commission on Carers in the autumn of 2007 and I was invited to sit on the Commission. From early December 2007 until June 2009 we entered into a fairly intense period of work to ensure that the New Deal for Carers and the 10 year Strategy really do afford significant improvements for carers. All the feedback from the consultations is being taken into account – so in a very real way carers voices are being heard. It is in many ways a unique moment in terms of Social Care – probably akin to the setting up of the NHS and decisions made at this time are crucial to the success of these initiatives. The invited Commission was disbanded in June 2009 and a newly-appointed Standing Commission on Carers has been set up to take the Strategy forward. I applied for and was successful in being appointed to the new Commission, for term of five years.

With the change of government last year, a new era has dawned in terms of care and support, as well as how the rest of the country is run.  Finances are very tight and the squeeze is on.  Unfortunately, despite what government says that the vulnerable will be protected and there will be no cuts to frontline service - those cuts are becoming an everyday reality.  Whilst not all carers and those they care for are in desperate need, there are many who are and they are falling foul of these changes and cuts.  I am keeping a watchful eye on developments locally and nationally - and bringing the attention of those who need to know the impact of the changes. The personalisation agenda is being rolled out - for better and for worse.  However, it remains a fact if every family or informal carer pulled out of their role tomorrow, the government would have to find the equivalent of a second NHS – in other words around £87 billion – in order to take care of all the people who they presently care for. The key to all of this, it seems to me, is a real partnership between government, local authorities, carers and the people who are cared for.

So, I invite you to watch this space as I will be adding information and reporting on any developments as I am able to.

Updated 14th January 2011