Saturday, 27 October 2012

Care Provision, what should it be ?

I belong to a group on Facebook called "Carers Solidarity" where we discuss various issues we as carers come across whilst caring for our carees. Most of us were appalled, some like myself feeling physically sick whilst watching the Panorama program on Winterbourne Care Home in the Bristol area. Now in the news this week the perpetrators of the abuse got their comeuppance.  

So the Question was asked "what sort of care you would actually like to see, what you think would work and what you may have witnessed does not work". 

So for what it is worth here are my thoughts. 

Firstly I feel I should give my background to help readers to know where I am coming from. I have an elder brother who has severe learning difficulties having sustained brain damage aged 2 from TB Meningitis, he lives in residential care. My mother is now elderly is mobility restricted due weight gained from taking various anti-psychotics and anti-depressants most of her adult life and lives in the community in between emergency hospitalisations. Then there is my dear Husband who contracted a Staph infection in 2007 leaving him a partial Tetraplegic (loss of function in all four limbs) , I am his full time carer. So I come to this from a variety of life experience.

I think everyone would agree that a measure of a successful society is how it cares for its elders, sick, disabled and disadvantaged. So how should the UK authorities ensure that this is the case in the UK?

Identification of those in need.

This can and is done to varying degrees of success by , GP's, LA's, Social Services, Hospitals, family, friends, benefit departments and District Nurses. Once a need has been identified it will  be assessed by one of the appropriate agencies. This works quite well when the person concerned fits neatly into one box of need covered by one agency, where it falls down is where, there are needs that fall across categories, for example , health care + housing + social services help. These more complex cases need to be allocated some sort of advocate that knows the various local and national systems. This person must have some clout to get things moving.

Identification of what help is needed.

Once an individual or family unit has been identified and someone has been allocated as the person to co-ordinate the package of need provision. The client(s) should be assessed to what is needed, people clearly identified as to who is responsible for providing with time scales. All of which should where ever possible should involve the client(s) to allow for personal choices and preferences to be taken into account. What sort of help:- 

  • social care provision, costs, funding options, where to be provided, type of care.
  • NHS Continuing care worker provision, how much, how many, where etc.
  • Is a Care / Nursing Home appropriate.
  • How far away would housing, care home be away from rest of family
  • Is current Housing fit for purpose.
  • How much should the GP be involved over and above the norm.
  • Are there any other agencies involved.  
  • Does the Client have all benefits entitled to.
  • Is there a need for on going physiotherapy.
  • Is there a need for supplies of equipment and consumables 
  • Is there a need for on going psychiatric assessment and counselling. 

From this an individual's / family's care package should be put together for every client that takes into account their needs now and in the future. Each item should have a lead who is charged with delivering the identified items, with time scales. This then becomes a care package that should be evolved with and for the client, being reviewed on an agreed time scale. 

The Care Package.

Once this has been put together pulling together all aspects of care needed, including, medical, housing, care provision. The Advocate should be tasked with reviewing the various elements on a regular basis as agreed with the client (or clients representative). People tasked with sub items in the plan should have their job evaluations judged against the delivery of those items in a timely manner, not how much money they save the department by non delivery of the needs. 

Accountability when things don't go as planned.

Nobody likes to be told they are not doing a good job, but we are dealing with peoples health and safety here, so people charged with supplying these services must be held accountable when they fail to deliver against the agreed plan. The client(s) must have someone they can go to if they feel they are not getting the help they need, they must not be left on their own to try and fight the many complicated systems that are in place. This issues must be resolved quickly. The allowance of Whistle-blowers must also be an integral part of these organisations. 

Care Agency management and the CQC  must take more care about who they employ, what they train them in and on going supervision and audit. 

Health Authorities must have procurement staff that are accountable when they fail to provide services that are set out as being needed. 

Housing authorities need to be accountable in ensuring that their areas have sufficient accessible housing, special needs housing, dementia housing, assisting living accommodation etc. They also need to be more flexible when they are told their standard offering does not fit the particular situation.  


I tend to agree with most of the findings of the Dilnot report. Those people, (the current over age 50's) that were under the impression that they were paying their national insurance so they would be looked after, should have their moral contract with the government honoured. Future generations I guess we know, it will be a different beast for us we will have to pay for more at a lower thresh hold level than at present. 

For goodness sake UK Government make up your minds what its going to look like so the rest of us can start paying our dues to make sure we have someone to look after us in our retirement, and ill health.

In Summary

Some looking at this may feel this is already in place, well if it is it ain't working. Care in the community from where I sit is a very unfunny joke. 

  • Hubby has been provided care workers for only 6 months out of the 37 months since supposedly covered by continuing health care.
  • Provided with totally unsuitable care agencies for Hubby's complex needs.
  • Care workers provided have not been vetted sufficiently.
  • No cognisance taken of the risks to my health as his carer.
  • GPs not pro-active in ensuring health and well being.
  • We have been on the housing list for nearly 2 years without suitable accessible accommodation being found. 
  • We have had various ups and downs getting Hubby appropriate medical care.
  • Social Services & PCT failed to help me see my dying father or attend his or two year previous to that my grandmothers funeral.
  • My mother has to fight for every bit of social care she gets. Been a victim of enablement policy and 15minute visits.
  • My eldest LD brother is nearly 100 miles away from the rest of his family making keeping contact is near impossible. 

It is Time to adopt a patient / client centred service for the provision of care in all its forms in the UK.


  1. I totally agree with every word you have said. But the powers in charge of this country will laugh and use every excuse and delaying tact there is to hamper any assistance.

  2. The problem we face is that we have got these so called medical experts saying that they understand the issues ... WELL, THEY DON'T KNOW WHAT THEY ARE TALKING ABOUT. Where as on the other hand, Angela fully understands the problems having experienced it first hand as a carer for her husband Terence.

    In my considered opinion, I am of the belief that Angela should be employed to head a professional team of qualified people who know what they are talking about and that the government should provide the necessary funds to achieve the care & support like Angela & Terence deserve.

    I've wanted to see things change for the better for people like those that Angela mentions and the list of things that need sorting asap which has been put together by Angela. I only wish I could do more to help but until we can get some UKIP MP's elected there's not much I can do except raise the profile of this desperate need for proper treatment for those who are most vunerable in our society.

    Let's all appreciate the fact that no one choose's to be disabled, it can happen to anyone at anytime, including those who consider themselves above the law i.e. MP's, Company Directors, and those in a position that could do something about this BUT fail to do so.

    1. Thank you, glad to know some one cares. We are currently working with a new organisation now called Cambridgeshire Community Services they have taken over from Peterborough PCT, we are hoping things will now improve. Relationship with new person a bit sticky at the moment because she has been given such a tainted picture from previous people involved.Apparently it is our fault that we have not had care workers provided.