Suggestions for new carers

We often get asked to offer suggestions for people who have just realised they are a carer. This may be after many years of a caring role.

We’d suggest -

1. Get in touch with the Carers Centre or with the support workers from Together.
2. Meet other carers – attend carers groups. Many of us don’t like joining groups or talking about our problems with strangers, but carers are often isolated. Joining a carers group is a great way to meet people who are facing similar issues and to reassure yourself that you are not alone in this. Other carers have specific knowledge about local services. And sometimes it is actually helpful to talk to strangers rather than family. Together have all the information about current groups.
3. Ask the care coordinator for a carers assessment. The Carers Centre and Carers groups can also tell you about assessments, but a care coordinator will need to do the assessment.

Key issues for carers

At our October meeting, 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. Anyone can call the Open Mind service or their GP.

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

meeting notes – december

Mince pies!  An informal meeting in the run up to Christmas.

Thank you to together for the hot pot and chilli evening last week.

Wishing everyone a peaceful and safe festive season.

5 boroughs consultation – november

5 Borough’s Acute Care Pathway consultation: Carers emphasised that they were concerned that it looked like all services will be provided from one central location. Transport across the Borough can be expensive and people have to get more than one bus to get to Peasley Cross.

Carers defined a ‘good’ service as one with prompt service within time limits. People should get help when they need it. Carers highlighted the weekly drop in with a psychiatrist which was provided at Vista Road. People had their 3 monthly appointments, but if they needed to see someone sooner they could attend the drop in without an appointment. Carers hope this best practice will be in the new model.

Pat’s Petition

This e-petition was started by a group of volunteers who are all disabled or have caring responsibilities.

Stop and review the cuts to benefits and services which are falling disproportionately on disabled people, their carers and families

The government were embarking on wholesale reform of the benefit system when the economic crisis struck. These welfare reforms had not been piloted and the plan was to monitor and assess the impact of the new untried approach as it was introduced in a buoyant economy.

Unfortunately since then the economy has gone in to crisis and the government has simultaneously embarked on a massive programme of cuts. This has created a perfect storm and left disabled people/those with ill health, and their carers reeling, confused and afraid.

We ask the government to stop this massive programme of piecemeal change until they can review the impact of all these changes, taken together, on disabled people and their carers. We ask the government to stand by its duty of care to disabled people and their carers. At the moment the covenant seems to be broken and they do not feel safe. Illness or disability could affect any one of us at any time, while many more of us are potential carers.

Please read and sign the petition at http://epetitions.direct.gov.uk/petitions/20968

More information online at: http://carerwatch.com/reform/

Benefits – forum discussion

We said we would include a summary of the Forum meeting on benefits. The following was written for people who use services, but will be of interest to carers. We know that carers have separate concerns – especially about not knowing about letters.

Cllr Pearson, Andy Woods (DASH), Chris Molyneux (Voluntary advisor at Warrington Disability Partnership) and Jen Bartion (St Helens Benefit Contact Centre) spoke to the Forum members about the current difficulties around Employment Support Allowance (ESA) and the Work Capability Assessments (WCA).

ATOS is the organisation carrying out WCA which is supposed to make sure people are on the right level of ESA. (Lots of acronyms there – but we need to learn this language).

ESA is a big problem for many people at the moment, with a lot of people being found ‘fit for work’ when they don’t feel they are ready. In mental health, we don’t make our problems clear to the assessors.

The ATOS assessors can only judge on what they see, but we try to act as well as possible. We all do it – we might be having a good day, we’re proud of what we can achieve, we don’t want people to see us at our worst. But if that’s all that ATOS see, that’s what they make their decision on.

People who are experiencing mental health problems of any kind, including the side effects of medication, can feel confused and unable to concentrate. We don’t like to admit the worst of our symptoms because of stigma and discrimination. No one wants to admit a psychosis that makes them behave in unpredictable ways – but we shouldn’t deny it on these forms. We need to say it how it is.

The Benefit Contact Centre has details of all local organizations and are very helpful. They have private interview spaces. Their contact number is 01744 676666

REMEMBER: Forewarned is forearmed.

• You are not on your own.

• Everyone is being sent a questionnaire – get help to fill the form in, or to look at it, before you sign it.

• Keep a diary – to remember how your week is going – so that you can remember just how your problems affect you for when you fill the forms in.

• Don’t include your phone number if you don’t feel able to speak on the phone. And don’t feel you must answer phone calls. Let them know in writing if you prefer to communicate in writing.

• You MUST attend the assessment.

• If you disagree with their decision you can appeal – get support.

• There are many local organizations who can help or signpost you to someone who can help. CAB can signpost, as well as the organizations here today. Helena Homes have a good service for their tenants.

• There are sites on the internet including Benefits and Work who have very good leaflets. Some are free while others need a subscription. The Forum will look into subscribing. http://www.benefitsandwork.co.uk/

meeting notes – november

We had two speakers – Danny from the Millennium Centre and Mandy from Remploy.

Danny described how the Millennium Centre was set up as a charity to support voluntary organisations in St Helens. As well as the NHS walk in centre, they have free meeting rooms which are used by many community groups in the Borough. These include several mental health groups such as together’s women’s group and the No Secrets group.

They are developing an online resource which will be a gateway to health and social care groups in the Borough. Danny has invited the Forum and the Carers groups to be included. We discussed that it would be best to have some members of the Carers groups speak about the different carers groups in one short video. Several people volunteered to be filmed and we will organise this with Danny.

Mandy’s role has been a pilot scheme of Individual Placement and Support (IPS) which is to support people back into work. She has been getting referrals from teams including Early Intervention, Assertive Outreach and Vista Road. She offers job search support, help with writing a CV and support with interviews. She also provides one to one support to settle people into work. This is all provided flexibly as needed by each person.

Since April, she has had 41 referrals and helped 4 people into full time employment and one person in part time work, which is a fantastic result for this group of vulnerable people. She has also helped with placements and with voluntary work. She can help people to calculate how their money would be affected by going to work and show that they would be better off financially. She can help with tax credits and permitted work.

Developing relationships so that people can be supported to work can take a long time. A person’s journey of recovery might have some setbacks so that they find things take longer than they originally hoped. In Wigan, a similar project has worked with people for 3 years. Nationally, there is a lot of evidence that IPS works.

But the funding for this successful project ends in January, after less than a year. If the person you support would like this kind of help, please do contact Mandy.

We hope that they will find further funding for this valuable project.

Benefits – council’s contact number

The Forum held a meeting on Benefits where several people described the support available locally. We will include a summary of the Forum notes in a mailout in December.

If people have concerns around their benefits, they can speak to an Advisor at the Council’s Benefit Contact Centre on 01744 676666. 

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.

Meeting notes – october – Clive Crossingham

We had invited Clive to share with us some skills and suggestions for positive living. As carers, it can be easy to forget about the positives. Clive had volunteered with state of mind to support us in challenging the stigma of mental health problems, and had offered to speak with our group. He promised to make us smile by the end of the evening and he certainly did.

We started off by writing a ‘gratitude list’, a few things that we are grateful for. Even with our small group, there was quite a selection. We do have a lot to be grateful for!

We also started to think about things we could do for ourselves that make us feel more positive. Clive handed out a list of 164 activities, starting with ‘being in the country’, ending with ‘improving my own health’, and including lots of smaller suggestions such as ‘listening to the radio’ and ‘having someone agree with me’.

Clive also insisted we each wrote down something we wanted to do by a certain date. Writing things down or talking to people about them, helps to encourage us to do them.

All Clive’s techniques are small steps that can make a big difference. They are important both for carers’ own health and also as suggestions we can use as we support others. Try them!

We thanked Clive for a very enjoyable evening and hope that he will return again in a few months to remind us again of the positives.

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.

Meeting notes – august – Julie Clarke and Mike Kenny

Everyone had a long discussion including about the changes to benefits. Many people are worried about Work Capability Assessments.

Julie also said she would arrange for John Edwards to attend a future meeting to listen to views on respite for carers.