Personalisation of care leads to more anger over budgets

Part of the personalisation policies which are set to come in nationwide but which are much more advanced in Glasgow, RAS-ing (pronounced "razzing") is causing substantial discontent.

The intention on the council's part is to make allocation of resources for expensive care packages fairer. Historically, some disabled service users have had very large sums spent on their care, leaving not enough for others with similar needs.

But the change risks pleasing no-one, with those offered reduced budgets as aggrieved as new clients who may also feel they are not getting enough.

Dr Christopher Mason, Glasgow City Council's Carers Champion, has already accused the council of manipulating the system for assessing people's needs, in a bid to meet budget targets - a charge the city's social work department rejects.

But many people on the sharp end of resource allocation feel the system is geared towards cuts, rather than an honest judgment of what people truly need, and claim they have been pressured into accepting support which they feel is too little.

April Prior, 52, cares for her 24-year-old son Paul, who has autism and profound learning disabilities. Paul, from Knightswood, also has severe behavioural problems, lashing out at his mother and support workers, and recently caused significant damage to the flat where he lives with support.

Although his mother feels his needs demand two carers around the clock, the council argues this could be provided in a care home and has allocated a budget sufficient for this. April is having to pay for additional staff herself to keep him at home and has also agreed to cover the remainder of the time. She says she agreed this under duress.

She was also astonished, she says, at the way her son's needs were assessed. A statement of his needs was worked out over eight weeks, with NHS and day centre staff involved his care, detailing his complex problems. But what the council assessed had been amended, she claims. "I couldn't believe the amount they had taken out. Everywhere it said Paul needed two-to-one care, social work changed it to one-to-one," Mrs Prior says.

"At the end of the day, they say I can hand his care to a care company, which will provide one-to-one care, and walk away. I think that will endanger him and the staff who work with him. I had to object.

"I feel I am being emotionally blackmailed into providing care and paying for additional care."

The self-directed support (SDS) policy is supposed to give families a choice, Mrs Prior points out. But not in her view. "It is supposed to give Paul the support we think is best for us. But it's based on what they are willing to pay, not what he needs."

Time and again this tension arises between high expectations encouraged by a policy which is publicly predicated on choice and options, but which families feel is dictated by budgets. There is also a tension between the council's duties and what carers and service users expect.

For instance, if a budget meets someone's needs by providing a care home space, the council would feel those needs had been met even if the person given the budget chooses to live at home. In practice if that option is more expensive that person might have to sacrifice something else. This is choice in action.

Stephen Davidson has recently won his battle to stay at home. The 46-year-old suffers from an aggressive form of MS which affects his breathing.

After a recent attack left him in hospital, he wanted 24-hour care to ensure he did not choke while left alone. Medical staff supported this.

However, Mr Davidson says social work staff told him that going into a care home was the only way this could be delivered.

His three-and-a-half week stay in hospital extended to three months as the case was decided.

Finally, he was able to go back home, although he has currently only 21 hours a day of care, and fears for his safety during the hours left uncovered. "I have choked once already, but my carer got me on my side and thumped my back to get me breathing again," he says.

His mother, Sandra, is not confident a care home would keep him safe. "He shouldn't be forced into an environment he doesn't feel secure in."

Nevertheless, Mr Davidson is pleased to be back in his home. Glasgow City Council says there are thousands of people across the city who are also happy with the outcome of their assessments and the independence personal budgets offer.

Ian Hood, of the Learning Disability Alliance Scotland, is not so sure. "I've spoken to one person who was given the choice between respite care and [arm's-length care company] Cordia visiting in the evening," he says. "She and her disabled partner now struggle to get their son into bed at home without help, so they could keep the respite care. They are not complaining. They have the respite, but two weeks ago she had both. People tell us they feel bullied into making impossible choices."

The pressure on budgets is intense, he says, as shown by recent figures confirming that the personalisation budget in Glasgow was overspent by £1,856,000. Mr Hood blames the overspend on the reduction in resources for families leading to more crisis situations.

"Local social work managers have been authorising short-term interventions of up to eight weeks at significant cost. Cutting budgets seemed like a good idea to council staff but it is leading to more and more crises and there has been a failure to save money."

The council completely rejects suggestions that people have been bullied or pressured. But another mum, Terri McCue lives on the south side of the city with her 18-year-old son who has Down's syndrome. She too feels she has been pushed towards accepting too little. "They threatened to stop all my son's services if I don't accept the budget," she says.

The £10,000 a year she has been offered will cover 32 nights a year of respite care but leave her only £1400 for his other needs, she says."I don't feel bullied, I am being bullied," she says. "There are times I've nearly caved in. I think there are hundreds of other parents, all over the city, who can't cope and they just accept the budget," she says.

Brian Smith, of public sector union Unison, says it is true that frontline workers are seeing their assessments overturned.

This could be, as the council argue, because assessments have included mistakes or been inconsistent. The council's resource allocation panels help ensure consistency across the city. But Mr Smith confirms claims from service users that the assessments of social workers who know them personally are being overturned by panels who have never met them. "Nine times out of 10 the social workers are saying: you are doing it to cut the budget," he says. "At best, this has helped distribute a limited cake on a more equal basis. But new clients are still getting less and existing clients are being squeezed. That is not personalisation, that is about budgets."

Glasgow City Council believes some service users are unrealistic in their expectations but insists the assessments are fair. A spokesman said: "We have a statutory duty to assess need and to make reasonable provision to support need. We are fulfilling our statutory duties and meeting the care needs of individuals in an appropriate manner.

"It's simply wrong to say that we would withdraw services from individuals if there were differing views over how support could be best delivered.

"A key principle of personalisation is that service users receive a fair and equitable share of available resources. The principle that service users receive a fair and equitable share of available resources is being followed faithfully in Glasgow."