Carers breaks – update from John Edwards

At the last meeting, carers raised several issues about the carers grants. John Edwards has agreed to attend a future meeting, and has also sent some comments:

He said there have been a number of factors which have affected the process, which had been fairly straight forward before.

He has moved to take over older persons services, so that he is still the Local Authority link into 5 Boroughs, but doesn’t have any operational responsibility. This also meant he was in a different location to the person who had been helping him.

There were also complications around changing computer systems. Mental health had been the last service area to go live on the Local Authority’s new computer system.

He hopes to get some admin support so that he can receive applications directly and have someone to add them to the system for him.

He asked that carers appreciate these difficulties, which are hopefully temporary, and he will attend the group in the New Year.

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Meeting notes – september

We discussed Breaks and Benefits

Carers Breaks

Staff and carers all described concerns about carers grant applications:

• they had been having difficulty getting decisions made

• carers are angry about the change in criteria – so that the person needs to be under secondary services

• one person described how the person they support receives therapy from a private company – but the carer was still not entitled to support

Most carers had had a break from the carers centre – this is open to all carers including those who support someone under primary care. But there is only one break per household and looked after person.

• Many carers support more than one person – they are only entitled to one break even though they are potentially taking on a larger responsibility.

• If several members of the household, including neighbours and friends, are needed to support one person, there is only one carers’ break between them. We feel this is unfair on people who support those who need 24/7 care and who therefore ‘jobshare’ between several people, who all need a break.

Benefits

People are getting anxious about Work Capability Assessments (WCA).

One carer reassured us and described what the process had been like for the person he supports. The assessor had been very reassuring, saying that it was ‘just a change of name from Incapacity Benefit to Employment Support Allowance (ESA)’. He said it sounded more like the old way, where they got in touch with you every 6 months or so to see how you’re doing.

But if the person doesn’t attend the assessment, the benefits stop. This affects the whole family.

One person described how their money had been stopped and they had to appeal. They got a letter of support from their GP and it went ok on appeal.

Marcus has been to WCA with clients.

The assessment is not a medical – it is an assessment. They ask questions about what you are capable of doing. So, for example, they might ask you about watching television as a way of assessing your ability to concentrate and sit still.

After the WCA, you get a letter saying whether you’ve been put in the WRAG (Work related activity group) which gives help to get you back to work, or the support group, which is more like the old Incapacity Benefit.

Carers may not know a letter has arrived – either about the appointment or about changes to benefits. Carers emphasized people can go to the wrong place and miss their appointment, or they may say nothing is wrong with them – and the benefit, which the whole family may rely on, is stopped.

Carers are worried that all people are being reassessed. And about the impact this has on the whole family.

Letters from the Job Centre or about benefits

People can get very stressed and anxious after receiving letters.

We have heard that the Job Centre are sending out letters to all people who are already on ESA and in the WRAG, to say that, if the proposed Work Related Benefits changes are made, then in April 2012, people will only receive ESA for 12 months.

This may be a distressing letter to receive.

We are concerned about any letter from Job Centre or Benefits office. They are often confusing letters and we suspect some people will believe their own benefits have been stopped. BUT this change hasn’t been decided in parliament yet.

Before the WCA assessment, some people receive a Capacity for Work form. This can be difficult to fill in. Together staff can’t fill it in and they refer people to CAB, Stevensons solicitors or DASH. But Stevensons are so busy they have closed their lists for 3 weeks. CAB can be difficult to get an appointment with. Dash are based at Windle Pilkington’s House and their number is 01744 453053

People also described receiving a ‘benefits integrity check’ which involved a phone call and a long form which is sent back to Chelmsford. They receive no feedback about this process, and are left feeling very anxious. We think it is related to Income Support.

One carer described how she had received two letters – one saying she owed money and the other saying they owed her money. The letters were scary. She was very grateful to staff at the Carers Centre for helping her to sort it out promptly.

If the person you support receives any letter from benefits or job centre, please do get reassurance and help with it.

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Meeting notes – july

Direct Payments – Carers thought the process of applying was far too complex so that carers give up trying to apply. We are told that for physical health, a decision is made within 2 visits, whereas for mental health it takes at least 3 or 4.

No carers have applied for a direct payment for themselves (unlike in Halton).

At the Forum meeting, people who use services said that there were long delays in hearing about decisions once everything is sent off.

Carers Breaks funding – There are 2 kinds of break moneys available locally:

i) for all carers – through the Carers Centre – some carers had applied and received this within 4 weeks. Not all carers knew about it. Some had been told there were no forms at the moment.

ii) For carers of people seeing a psychiatrist – through John Edwards. This takes two months or more. The criteria have recently changed so that people have to be under a psychiatrist to get this fund. People who have been accessing this funding for several years may not be able to access it now, but their needs have not changed. Carers described the unpredictable, stressful, full time nature of their role, with broken sleep and constant worrying. Their needs have not changed – how will they be supported?

3 Respite – Carers unanimously respond that there is no respite.

One of our carers was told by a CPN, that, now her son is in prison, she’s got her respite. We find this unacceptable.

Carers described how they cannot take a relaxing break. If they can go away, they worry. Carers have returned from short breaks to incidents including finding people unconscious on the floor with physical health problems, and people with injuries from suicide attempts. While there is no safe, well run, respite service, carers cannot get a true break.

Carers own health is suffering.

We have one carer who is supporting a person whose physical and mental health is deteriorating. She reported to us about unsatisfactory services from the care agency including care workers not turning up, or being very late. They have not turned up at all 3 times in one month. She has asked for additional support so that she can guarantee to attend carers groups, which she has always referred to as her ‘social life’, but this request has been turned down.

Carers also emphasised the amount of stigma and discrimination that goes alongside mental health problems. Mental health carers have to speak to many staff who may not be as aware of issues around mental health including barristers and A&E staff.

Carers are still having to take responsibility for discharge medications when people leave hospital – we heard examples of 12 hour waits for medication. We heard of the wrong leaflet included in with medication. A carer had been told by the Dr that they would receive 2 weeks medication but the hospital only gives 7 days. We heard of someone being given the wrong type of tablets.

Carers at the meeting can see that all services are getting cut, but they are very aware that mental health and carers weren’t well funded in the first place. Carers are fed up with repeating the same requests for support over many years with no positive outcomes.

We agreed that we would start to think of writing our stories so that we could share them and not keep repeating ourselves.

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Meeting notes – April – Caroline Barlow

Caroline Barlow – St Helens Council

Caroline described her role and the changes at the Council over the last year. She described the changes in funding including the reduction in financial settlement and the ending of various grants, including the Area Based Grant, which had paid for the together carers support service.

There has now been some short term funding found to provide a reduced service from together. There will be two part time workers funded by the Council and one part time worker funded by the PCT. These will be reviewed every six months.

This is still a 50% cut to services. Jackie said they would reduce the service with –

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Meeting – February – ILA

Lindsey Briggs and Ros from Independent Living Alliance (speakers)

Independent Living Alliance was set up 10 years ago in Liverpool. They now support 150 people across the North West with learning disabilities, mental health problems and challenging behaviour. There are no age limits. They have been in St Helens for 6 years. The majority of their work locally has been around learning disabilities, but they do have a lot of expertise in mental health. In Liverpool, Manchester and Warrington they have a lot of mental health work.

They can go into people’s homes to provide help with personal care, money management, looking after the home, safety, accessing local leisure activities and more. They can administer medication. They also have a supported living centre with staff who are there 24/7. They have a respite flat in Southport.

Referrals can be made by social workers or by the individual. There is a charge for their services, but people can use their direct payments, individual budgets or carers break money. They visit to find out what the person wants or needs and they do include the carer or family.

Carers discussed how we need continuity and how it isn’t easy to just have someone new to come into your home. We talked about whether it would be possible for a few people to do something together so that people could get familiar with a worker before needing to use someone for one to one support or respite.

We were pleased to hear that this service is available to offer respite in St Helens for mental health carers. We were disappointed that we had not heard of it earlier.

http://www.ila.uk.com/

Client Services Team – Telephone: 0151 708 2940

 

 

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Key issues for carers

At our meeting in October 2010, carers had a long discussion which could be summarised as four issues:

1. Crisis response:     Carers described how the crisis response had been an ongoing issue. This is something that services are currently looking at.
2. Respite:     There is no respite for carers locally. Now service users are being treated more in the community, there needs to be more support for carers. We will look at provision in other Boroughs, especially in Halton.
3. Medication:     Carers want more involvement and support around medication. They are concerned about side effects, and want to know about alternatives to medication. Carers worry about changes to medication. A few years ago, medications would be changed during an inpatient stay. Now this is happening at home and it worries families.
4. Discharge and readmission to services:      Some carers were concerned about how to seek help again once the person they support is discharged from secondary care.
   

We continue to take these to be the four key issues for mental health carers in the Borough.

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