Thank you for doing this, Maryjoan x
Consistency of care. My Mum in law has had so many different social workers and consultants. Each time you have to start from scratch, going over the history and the details, and often you encounter professionals who dont have the time (or in some cases even the inclination) to really get to know the PWD and decisions are made based upon the 'experts' own opinions and past experiences, not on the needs and situation of the individual pwds. Information gets 'lost' each time a new 'expert' becomes involved, which leads to additional stress and misery both for carers and the pwd, and sometimes to quite serious mistakes being made. This business of appointing a 'new' social worker each time a crisis hits, but having no named SW in between, is so wrong.
The whole system of financial support needs overhauling. Carers allowance is a total joke, in terms of the amount paid to carers. The fact that it is stopped, if the pwd is in hospital for a certain length of time, is wrong. The carer can't just go and get a job to tide them over whilst waiting for discharge, applying for other benefits whilst waiting for discharge is a waste of time, as it takes so long - and the applications are so often refused, anyway. And besides which, most of us find that whilst our pwd is in hospital, we actually do just as much caring and have just as many expenses.
The financial impact on carers when their pwds either pass away or go into residential care, and the carer is often left emotionally, physically and mentally wrecked. Both the health and the finacial costs must be considered and some system of support put in place.
Care costs - the pwd and their family meet 2/3rds of the anual cost of dementia care. I don't know of any other illness where the NHS and local authorities place so much of the financial burden on the sufferer and their family. From inadequate continence services, to the total ingnoring of so many other costs (hospital beds, mattresses, incontinence aides, wheelchairs, increased utility bills, laundry bills, etc. etc) through to the costs of day care, respite and residential care, the pwd and their family are penalised financially.
A legal obligation for the local authority to provide adequate day care and respite services. Carers assessments that identify the need for support are totally useless when the support services are cut or completely stopped in so many areas across the country, and it is impossible to access day care or respite.
CHC is a joke. Those in charge of deciding if its to be awarded operate from the basis of 'saving costs', not the basis of awarding care to those in desperate need. The rules and criteria are too open to interpretation, making it so easy to be refused, no matter what the evidence or issues. It has to be tightened up, clinicians opinions should be given more weight than the opinion of the assessor or health board managers, and the whole process - including the process of appealing - needs to be simpler and faster.
Local authorities having the right to set the limit for residential care costs so far below the actual costs charged by the homes. This limits choice of home for the family and pwd, and often leaves the family paying incredibly expensive 'top ups' or having to travel miles to se their loved one. More weight given to the pwds right to be placed close to family and in a facility that is chosen on the basis of providing the most appropriate care - rather than the cheapest.
More honest info for carers, right at the start. The damage and difficulties caused by the lack of openess is huge. The issues may be incredibly difficult to even contemplate, but they still have to be faced. Carers have a right to be prepared properly, to have some idea of what they might encounter, so they can prepare themselves mentally and have the information to make the best decions for the pwds, right from the start.
Thanks again, Maryjoan x
