Archive for the ‘meeting notes’ Category

We had invited representatives from 5 Boroughs to update us on local mental health services.

Mike, Elaine and Julie described recent changes across the Trust, and emphasised that these should make no difference to our access to local services.

Julie described all the activities that are now on offer on the wards, including art therapies, cooking, mindfulness, relaxation, pet therapy, music, and reading. The gym is also available with staff support. Carers were pleased to hear about all this activity.

The Section 136 suite (which is used when people are brought for assessment by the police) is based at Whiston Hospital and there is no intention to move it back to St Helens.

The project where the mental health teams work alongside the police team to support people, has resulted in a significant reduction in use of Section 136 and has been extended for another year. Carers said they would like to hear more about this project at a future meeting.

The Trust Board have recently discussed the Mazars report. Mike described the very positive work the Trust has done to ensure reports of serious and untoward incidents. Although some carers had specific concerns which Elaine will follow up.

There is a Triangle of Care noticeboard on the wards and carers are involved in discharge planning and reviews. Staff now have more informal contact with families on the wards. There are plans to support community teams, with an additional carers meeting. Members of our group will support this new group.

There is a mental health awareness day on Tuesday 17th May at Harry Blackman House – 11-1pm. Members of our group hope to attend.


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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.

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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.

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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.

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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.

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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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As part of our Carers Week celebrations, Denise organized a fantastic buffet for everyone and we all had a relaxing and enjoyable evening. A huge thank you to Denise for all her efforts.

Some of the carers went on the trip to Blackpool with the Oasis group and had a fantastic time in the glorious weather, but many more missed out. Carers value these trips because they can go with the person they support. And being with other people who understand the difficulties makes going out a lot easier.

We have decided to organise more trips. We will do these jointly with the Oasis group so that carers and the people they support can go together.

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June 1st

Karen met with Julie Clarke, Business Manager, St Helens Adults services for an update on our carers priorities for 2011. (Crisis – Respite – Medication – Discharge and readmission)

Julie emphasized that the current redesign of the 5 Boroughs pathway would address crisis, respite and discharge for people who are using services. But we shared our worries that carers might get overlooked in the design stage. Hopefully we have all learnt from the experience of Change for the Better. Everyone does understand the importance of involving, supporting and including carers. Julie is going to take carers’ needs to the next Business Managers’ meeting so that they are included right from the  start.

There will be a consultation on the new model – Julie will request that this takes place in our July meetings rather than leaving it until after the summer. 

Julie took away a copy of our DVD of carers’ experiences to see if this could help with local staff training on carers.

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Emma brought in some flyers from the LINk and also told the group about the dementia service events. Carers had various views about carer representation at LINk and noted that at least one mental health representative does have caring responsibilities.

Carers discussed about carers grants from John Edwards – these are being refused if the person you care for is not under secondary services.  He is saying that we are not entitled to the £250 carers break money. Temi at together confirmed that they had not been informed of this change.

The carers support group representatives highlighted that this year they were getting the rent to pay for the group for 12 months, but nothing for refreshments.

90 % of carers now are on anti-depressants and we are saving the government thousands of pounds a week caring for people alone.

Emma had long conversations with some carers and took a lot of notes.

Denise gave out the feedback sheets and asked for questions for LIT meeting:

  1. why are carers breaks being turned down if the person they care for is not under CMHT when they still care for them full time no matter what.
  2. why hasn’t John Edwards come to a carers meeting to explain these changes to us?
  3. why do we feel unsupported with all the cuts? What happens if we are ill ourselves?

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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 – (more…)

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