Home care charges are a postcode lottery

Re.: Which? Money, THE COST OF CARE AT HOME. Fair care?
My recent experience.
A very vulnerable very frail relative was assessed as being ready for hospital discharge. A nurse from the hospital phoned and said that we, her family, would have to find a Home suitable to meet her care needs: and that the Local Authority (LA) had been informed and would want to carry out a financial assessment. Soon after that a LA Social Care Worker phoned with a similar message confirming the urgency of us, the family, finding a suitable Home because our relative was now a hospital ‘bed-blocker’ and confirmed the requirement for a financial assessment.
We said ‘NO’ both to the Nurse and to the Social Worker. We were not going to find a Home nor was there going to be any financial assessment.
We said no because in 1999, Pamela Coughlan, a woman with disabilities, was denied fully funded National Health Service (NHS) care. The reason given was that she only needed ‘general’ not ‘specialised’ nursing care. She argued that the NHS was wrong in transferring responsibility for providing and funding her package of care to the Local Authority (LA) Social Services. The Court of Appeal agreed with her and laid down that if a persons’ reason for receiving care is primarily a health need, then the NHS is responsible for funding the whole package.
In 2006 a Mrs Grogan challenged her Primary Care Trust’s eligibility criteria when refused NHS funding for her care. The High Court agreed and said that the criteria were ‘fatally flawed’. The Judge stressed that anyone whose needs were the same as, or exceeded, those of Pamela Coughlan should be entitled to fully funded NHS care.
Since then there have been many other cases of other people being refused fully funded NHS continuing care: who on appeal, or on going to Court, or complaining to the Health Ombudsman or all of these have, eventually, often with great persistence and perseverance, gained full NHS continuing care funding.
The location of the package of care, whether at home or in a Home, is irrelevant. It is not the HA Patient or the LA or the LA Client or other Family members or anybody else who is responsible: it is the responsibility of the NHS. Because; if a persons’ reason for receiving care is primarily a health need, then the NHS is responsible for funding the whole package.
The outcome was that the NHS found a suitable Home, (in consultation with the family): and the NHS funded the whole care package: doing so for as long as the care package was needed.
If a persons’ reason for receiving care is primarily a health need, then the NHS is responsible for funding the whole package. The location of that care is not relevant.

Experience of arranging care for an elderly, physically and mentally lady ABYSMAL County Council provides information on procedures according to national guidelines but when trying to use the system it is patently obvious that the council is rapidly following a plan to disengage itself from direct provision of care and is intent on achieving a range of untenable systems to save as much of the £27 million budget cut. To quote the council .”Trying to meet the growing demand through traditional residential care is NOT DESIREABLE and will become increasingly unaffordable” The strategy is clear from their published performance data/targets.. Permanent admissions to residential and nursing care-older people 2010/11 =917, target 2011/12 537 a 41% reduction. Admissions -physical disabilities 2010/11= 30,target 2011/1 is 24.
On mental health the target for admissions 2011/12 is 6. Council had in 2008 9,704 people with dementia and project this to increase to 17,000 by 2025.
As a individual the following occurred. Assessments made and not recorded, Support withdrawn with no consultation. Assessments made without any involving close relatives. Conflicting opinions from Social services. Assessments made by own staff ignored by the council Unable to answer written or verbal questions. Unable to understand Alzheimer’s at various levels or take the persons mental state into consideration. On a local basis contacted three local councillors for advice, only one responded. Local MP very good. Prime Minister’s Office and Department of Health responded quickly with useful information. Council response to direct written questions or e-mails, mostly ignored. Upon assessment by Council assessor recommending residential care, Council “panel” rejected their own assessors submission twice. Third assessment did result in a residential placement. The Lady was in warden controlled housing with relevant pendant and fixed emergency systems. However with Alzheimer’s forgetting to operate the pendant or taking it off resulted in spending some 12 hours overnight without any liquids and going in and out of consciousness. Had been acting as her carers for some time and had looked after this lady for some 15 years before she had various falls and Alzheimer’s became a significant issue. The support from local council had been ceased without any carer involvement and no written assessment made. Only due to the GP and a local community nurse was this lady put into respite care avoiding the A & E 3hour wait, the bed blocking and inevitable discharge back to the same high risk situation. But once in respite care the council decided the lady was fit to go home. That is a lady who cannot cut up food forgets her medication, cannot wash herself and wanders out of her accommodation admits anyone who knocks on the door, leaves her door unlocked and cannot remember to take her medication, cannot get in an out of her bed. Even with bought in pre cooked meals, incinerates them in the microwave in the aluminium containers, melting the aluminium. As above the assessors report was rejected, twice. The reason given was “they” needed to learn more of the lady’s condition. This when some 25 years of local medical records/mental assessments and some 15 years of family caring knowledge was available.
This is an indication that this council cannot cope with change/budget, produces lots of publications/strategic assessments. To see if this was a on-off did gather information from staff on the ground and it appears there is a significant difference between those operating the system and the politicians running it. Such comments from local solicitor,” if I write to them they will take no notice”. The GP , “they do not involve us or will listen”. The local mental Health unit “they do not listen to us”.
Based upon this personal experience it appears that allowing politicians in the form of local councillors to control the car for the elderly should be significantly overhauled and involve medical and mental health professionals, with those immediately involved in care able to comment as well.
If you have an elderly person in care or respite care and you receive a phone call at 9.am saying ” if you get here by 12am you can be involved in an assessment. The council do not tell relatives when they do this ” you should be suspicious. Also if you complain and receive a reply from their complaints officer detailing what will happen during the process and then the silence occurs, beware. If your MP writes on your behalf and the council Chief Executive responds saying he has read he file and it all appear correct. Beware Through specific access to records (SAR) (you will need a LPA, Health and Welfare) you find that some records of assessments do not exist beware.Do contact the council safeguarding officer, they will enquire but you may still not make progress. Other elderly people in this council’s care do generally receive very basic adequate care. Some like the lady in sheltered accommodation who the rehabilitation unit have “taught” to wear pads overnight as she cannot use the toilet, I am not sure. The man with dementia who the council put in care because he has falls then send him back to sheltered accommodation when he recovers with no local family support, except warden visits, until the next time. In the 1980’s wharehousing old mentally ill people and keeping them docile with chloral-hydrate was used by this council along with others. The present system is much improved but requires some more serious thinking

Four years ago my friend, then aged 47, suffered a brain injury. A year later, after treatment in hospital and at a specialist brian injury unit, he moved to a neuro-disability care home for a further period of rehabilitation with a view to more independent living thereafter. Three years later he’s still there. He doesn’t have a care plan, the responsibility of which is that of Cheshire East, the local authority. He is not receiving the therapies he needs due to the LA not contracting properly with the care home about what the funding covers. He is funding his own Personal Assistant to enable him to access the community because Cheshire East refuse to pay even though this need was assessed as Substantial three years ago; his limited savings are therefore being depleted. We complained to the Local Government Ombudsman who found that the council had failed and that my friend had suffered an injustice in being held in the care home for at least two years longer than he should have been; the Ombudsman made several specific recommendations, which Cheshire East have ignored. We wrote to his local MP who wrote to the council. The director of social services replied with a disingenuous letter claiming amongst other things that the crucial care plan was agreed (it isn’t). It has taken three years to secure a full assessment from CHC in respect of NHS funding. CHC point the finger at Cheshire East and Cheshire East point back. Cheshire East are even in breach of their legal obligations under Fair Access to Care legislation – they’re not bothered. After three years we have had to become au fait with the complex legislation, guidelines and practice surrounding social care. We honestly thought that a favourable Ombudsman finding would surely mean that Cheshire East would start providing my friend some effective support and case management. Not so, they continue to be self-serving, grossly inefficient and disingenuous. The services involved, Cheshire East, CHC and the care home are completely disconnected, many times communication being via ourselves. Resourceful and determined, we can only imagine how impossible it is for people who are less equipped to represent a vulnerable person when we have had so little success. We are exhausted and dispirited whilst my friend continues to linger in a situation which is detrimental to his wellbeing and which places him ever further away from being able to integrate into the community. The only advice I can offer anyone in this kind of situation is to know that whatever you do, however hard you try, however morally and legally correct you are, it probably won’t make any difference, social services departments like Cheshire East are just too appalling. Try at least to look after your own health and emotional wellbeing so that you too don’t go under in the process.