P.H.B. A New Era in Care from April 2014
I am one of many people who have been caught in the cross fire in a war that rages between ‘Social Care’ and ‘Health’, a war costing billions of pounds and where the Geneva convention does not apply. The war is vicious, takes no prisoners, has no regard for the most helpless in our society, has no regard for an individual’s opinion or that of their family, and in essence strips the already disenfranchised of their right to self-determination. Within this unreported war raging within England, there are individual battles that break out, skirmishes if you will, with bayonets fixed, volleys of fire between two Government departments fly overhead of the person needing their support, their professional attention, but instead they lurch and counter stab at each other until one party or another is defeated by some official ruling or another, and not once was the person stuck in the middle, the client these two statutory bodies are supposed to be serving, listened to. Their opinion was less than respected, heard but dismissed unless it added ammunition to one side or the other.
In my own case my family and I have been witness to one of these skirmishes, one of these battles. Was it in order to get my family and I the best quality of support possible? Were the salvos at each other to ensure the needs of my family and I were met? Were these assaults, defensive actions and counter attacks in order to make sure we were listened to? The answer is a loud and resounding “NO!” I believe my family and our needs were not thought about and our voices were not heard.
We/I suffered eleven invasions from one side or the other, taking the form of invasive, extremely invasive and humiliating assessments of need, asking the most embarrassing of questions on eleven separate occasions. We were at the focal point of attention that made no difference to our situation, the situation being my deteriorating physical state. But we went along with each and every foray into our most personal of issues, as we were reassured it was in our interests not to raise the drawbridge and send them all packing. But these people, these assailants, had a singular agenda that became clear in the passage of time. In my case this battle raged for 6 months and at the personal expenditure of dignity during eleven assessments.
You see, all during these many months and many home invasions, we were asked and we demanded to have control over our social care budget under the Personalisation and ‘In control’ Budgets schemes, which social care promised us. In fact, we were ideal candidates with our nursing and community care service provider experience, and with my experience of managing employees; ideal candidates for Personalised Budgets. We were even being allocated money to advertise for carers and more than enough money to employ them to take care of my increasing activity of daily living needs. This would also mean the pressure of care would be lifted from my family, with the added bonus that we could get to know and build a relationship with those that we were to employ. This would be the direct opposite to using a ‘care agency’, which would mean one would never really know who would turn up to assist with my care, how well they were trained, if they knew anything about my case/needs; or were vetted and CRB cleared properly.
We even had council employees helping us draft the advertisements, when this particular battle was brought to a crashing conclusion, a conclusion that made Statutory Social Care the winners and my family and I resounding losers along with health based continuing care. You see, the battle was between social care and NHS based continuing health care, and the loser picks up the bill. This is what it is all about, who pays. In fact, this war rages even now with other families and individuals being completely unaware. We went through eleven separate assessments for one reason only – to decide who picked up the bill, with social care winning and placing my needs completely under the auspice and financial responsibility of ‘Health’.
Although we felt like we had been the victims of disingenuous statements by social care agents, and that we had been conned in some way as these assessments had not been for our benefit, we still went along with it all. Then the final arrow of the battle hit us right between the eyes with a deafening thud of reality and devastation. We were not allowed to have our own Personalisation Budget as we had been promised, as under NHS regulations people fully the responsibility of ‘Health’, cutely named ‘Full Continuing Health Care funded’. That’s right, all the promises, all the time spent working with ‘social care’ to get ready for employing our own carers and having our own budget in order to meet my own needs, was just one big sucker punch, as the whole time social care were trying to ditch us and get ‘Health’ to pick the bill up. That was the point I lost all trust in and all respect for social care and those working for this particular Authority.
Instead of independence, instead of choice, instead of empowerment, instead of self-determination, I was allocated a care provider and all the negatives that go with this.
This war continues all over England but finally a peace accord between ‘Social’ and ‘Health’ is on the horizon, finally the needs of the individual and their right to be in control of their own care, having their needs met in a manner and way they want them met, and even at a time they and their family want them met. Finally the service user’s voice, the person living with their condition, will genuinely be front and centre of all that occurs. The government have announced that from April 2014 a person with a ‘long term’ condition can be assessed for receiving a Personal Health Budget, which puts the funds for care and rehabilitation of that long term condition into the hands of the person. The details, shall we say the ‘small print’, is to be released, but it is a welcome step to help people take control of their futures and ascend Maslow’s Hierarchy of Needs pyramid.
The implementation of Personal Health Budgets (PHB), completes the control of the pathway for people with long term conditions, it allows all the existing elements to join up, it comepletes the circle of self determined support:
- Social care Personal Budgets – overseen by social worker with the service user.
- Access to work or educational support – overseen and controlled by the service user
- And now Personal Health Budgets – overseen by the person’s GP and the service user.
All of these three key elements can be brought together into a holistic, person centred plan of care and support that the individual and their family can control, support in a manner and type that the service user wants. Some of us have waited so long for this day, after seeing social based ‘In Control’ unfold across the country, only to have it stolen from us due to continuing care needs; to seeing these PHB trials rollout with fingers crossed that when the Coalition took over they would follow it through; to this wonderful announcement. All I have to say is well done the Coalition for implementing the Personal Health Budget scheme – it is life changing!
I understand that the Government intend to exchange Disability Living Allowance with Personal Independence Payments and remove up to 50% of all DLA claimants at the same time, but even with this potential negative, the PHB will allow people such as myself to finally take control of our lives and be the decision makers! A new era in self-determination is about to unfold for people such as me!
Other information you may find of use:
Finally there is light at the end of the tunnel!
Smiling Cat Ventures and Innovations Group
Smiling Cat Ventures Ltd (www.smilingcatventures.org)
Innovative Minds At Work Ltd (www.innovativemindsatwork.org)
Moments in Time Ltd (www.momentsinmind.org)
Innovative Business Consultancy Ltd (www.ibcv.org.uk)
Systems of Equality Ltd
Passport to Care Ltd (Social Enterprise – Not For Profit)
Spiritual Inclusion (Social Enterprise – Not For Profit)
Disability In Business Centre (in development)
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