Carers Forums in Cornwall Minutes of the meeting of the PENZANCE FORUM held on 26 th November 2015 at Hanover Court, Wharf Road, Penzance In Attendance: 7 Carers, hereafter referred to as members Jane Royle, CSW Team Leader, Cornwall Carers Service Chris Watkin, Administrator (West), Cornwall Carers Service 1. Welcome/Apologies/Introductions The chair welcomed everyone to the meeting and introductions were made round the table. There was one apology. 2. Actions Arising from the Last Minutes & Approval to Publish actions from the previous meeting had been completed. Members present gave their approval for publication of the minutes from the meeting held on 3 rd September. Action: Chris 3. Items raised by Carers The chair was concerned at the time carers are having to wait for assessments. She gave an example of a carer who is looking after her mother, who is still waiting for an assessment, and the affect this is having on her family life. A referral has been made for a visit from a CSW. Jane said that the intention is for the Cornwall Carers Service to take on some of the backlog to speed things up but there has been a delay with the Council concerning the variation to the contract. It is not expected to start until January now. A member who now feels she needs support with her caring role has a visit from a CSW arranged for early December. She has been advised by Parkinsons UK that she needs a Carers Assessment and has requested an application form. Another member had received help from Jane Richards, his Carer Support Worker, who had helped with completing the application form for higher rate mobility for his wife. The process had been quite lengthy, with his original request made in early May, due to the requirement for him to become an appointee for his wife before completing the forms, and Jane had visited on more than one occasion. Confirmation 1
has now been received that the higher rate mobility has been approved and will start next week. During the process he found the assessor from ATOS Healthcare sympathetic, and would like to pass on his sincere thanks to Jane Richards for her help, which he considered was exceptional. He advised anyone needing to apply for an enhanced benefit to request help from the Cornwall Carers Service. He found the help with filling in the form particularly helpful, and pointed out that if there is a need to appeal the CSW can also help with this. Action: Jane to pass on the members thanks to Jane Richards Another member said that she also finds form filling difficult. Her situation has been made more difficult since moving from another part of the country with no continuity of health records, and no help from Social Services. Now that her son s health needs have changed she has more caring responsibilities and needs more help, but because she is used to his needs, finds that she can miss things that should be mentioned when filling in forms. However, she has had contact with Emma Richards CSW, and has found her extremely helpful. Action: The Chair will highlight Carers appreciation of the help they receive from CSWs at the next CPB meeting. A member has found it difficult to find regular respite for her cared for, although there is a budget in place, because there is no facility to book ahead. She also said that not all homes provide care for those with dementia. She has a list of places to contact and has been told to ring on Monday mornings to check current availability. The member receives direct payment for her husband s care, which includes an allowance for respite over the year. However, she is unable to use the allowance regularly because of the shortage of respite places. One of the members present said that he had faced similar difficulties when arranging respite for his mother and had been unable to get information about available respite from Social Services, who keep in touch with homes and have a list of vacancies, because he was self funded. He suggested a list of homes to contact that he had used to provide respite in the past, and another member said that her cared for received respite care via Shared Lives. Action: To be raised as an issue at the CPB Action: CCS to find out if respite offered by Shared Lives includes care for those with dementia Action: CCS to find out what the current position is for those who are self funded or administer their own personal budget with accessing the information Social Services keeps about respite availability Another member shared her concerns about the length of time taken for an ambulance to arrive, after her cared for had had a fall. She was also extremely concerned about the lack of coordination and communication in hospital. She had experienced a delay of several days for each new ward or hospital to become fully aware of her husband s situation. As a dementia sufferer he can t communicate effectively himself, and will just answer yes to any question put to him. She was particularly concerned about the lack of apparent knowledge of dementia between all staff, and gave an example when her husband had gone to West Cornwall Casualty Department complaining of pain, but didn t identify the correct part of the body to the Doctor. The Doctor took this at face value as he didn t identify that his patient had dementia, and didn t check for injury to other areas, resulting in a broken hip being missed There was a delay of 2 days before he was x-rayed, during which time he was being moved about. When he was finally transferred to Treliske he was not allowed any food prior to the operation which was then delayed until the following day, so then faced another day without any food. Following the operation he was moved back to the ward too quickly and suffered a choking incident which led to pneumonia and 2 courses of antibiotics. He was subsequently moved to another ward and it was approximately another 3 days before his requirements were properly understood, despite having a This is Me form. The member was advised to make 2
Healthwatch Cornwall aware of these issues and the Forum s CPB member will raise the issues at the next CPB meeting Action: Jane will discuss the issues with the member after the meeting with a view to completing a Healthwatch Cornwall form. Action: The lack of communication in hospitals will be raised as an issue at the CPB Another member said that she s experienced similar problems in the past, when her father was in hospital following a stroke. She received 3 calls to say her father wouldn t answer questions, when in fact he couldn t speak because of the stroke. Concern was also expressed that there is a lack of community beds in the area, following the closure of Poltair, leading to patients sometimes being sent home too early, or blocking a bed at Treliske when they no longer require such intense care. Action: The Forum s CPB member will again raise the lack of community beds at the CPB meeting. A member whose mother needed to go into full time residential care has now had the financial issues sorted out, following implementation of the new Care Act. His mother s personal budget now pays for her care, with no requirement for a top up. Members discussed the benefit they had gained from a previous meeting when Graham Webster, one of the Shadow Governors for the RCHT Foundation Trust Status bid attended. They would like to explore the possibility of inviting him to a future meeting. Action: CCS will ascertain the current status of the RCHT Foundation Trust Status bid and progress as appropriate The chair would like to arrange someone to attend the January Carers Group meeting to give information about energy Action: CCS will make enquiries and update the chair A member highlighted the damp problems that many suffer from in this area. Jane suggested looking to see if any help was available from the Winter Wellness Campaign. Action: Jane will enquire about any help that may be available through the Winter Wellness Campaign and forward the information to the member The chair raised the clash between the Forum s meeting dates and those of the Memory Café, the Penzanced 50+ Forum and the CPB meetings. Following discussion amongst members, it was agreed that meetings could be changed to a Wednesday. Action: Chris will check Forum dates already arranged in other areas with a view to changing the Penzance meeting date Members also discussed the suitability of the current venue and agreed that enquiries should be made to find a different venue. The February meeting has already been advertised in the Carers News, so will not be changed. Action: Chris will make enquiries to find a more suitable venue for Forum meetings from May onwards 4. Information from the Cornwall Carers Service Jane gave an update on the renewal of the Carers Service Contract. The Service is funded by NHS Kernow and Cornwall Council and commissioned thorugh Cornwall Council. The contract is due for renewal and Cornwall Council are expected to announce the tender in early January. The Cornwall Carers Service will then bid to provide the new service. In the meantime Cornwall Carers Service has received official notice of a 3 month extension to the current contract. The Carers Service is carrying on as usual and very busy at the moment with a lot of new referrals and allocations. There have been 82 referrals in the last week. The most up to date Carers Rights Guide is available and can be accessed via the following link http://www.carersuk.org/help-and-advice/get-resources/carers-rightsguide 3
Any member who does not have email can get a free copy by contacting The Carers UK Advice Line on 0808 808 7777 between 10-4pm Monday to Friday. Carers UK have a new report Valuing Carers which is available to view using the following link: Valuing Carers 2015 the rising value of carers support Following the Government Spending Review on 25 th November, the Carers Trust is disappointed at their failure to pledge funding to support unpaid carers. Members were reminded that the Carers Carol Service will be held in Truro Cathedral on Monday 7 th December. The chair said that a coach has been booked from Penzance, but agreed that it would be difficult for some members to go because of arrangements for their cared for. Individual Carers Grants will cease at the end of March, when funding from Cornwall Council ends. Applications are still be accepted at present, but it is anticipated the money will run out in February. This was a discretionary grant and it is expected that help will be available through the assessment process and financial budgets in future. A member wished to record carers gratitude for the grants that have been accessed via the Carers Service and for the activities arranged. Copies of a recent presentation on grants and PIP/DLA given by the Carers Service at other Forum meetings will be circulated to members of the Penzance Forum. Action: Chris 5. Report from the Carers Partnership Board The Forum s CPB member gave an update from the last CPB meeting held on 10 th September: o The Assessment Process was raised again. A significant number of carers have raised concern about the lengthy delays with the process. The matter is ongoing and there should be an update at the next meeting on 3 rd December, when the issue will be raised again. 6. Review of Actions Raised at this Meeting (Apendix 1) 7. Issues to Raise at the Carers Partnership Board (CPB) (Appendix 2) 4
Footnotes to Members 2016 Meeting Dates for the Penzance Forum Thurs 25 th February 2016 May, Sept & Nov meeting dates & venue to be advised The meeting will be held from 2-4pm at Hanover Court, Wharf Road, Penzance TR18 4UJ Reasonable travel expenses to attend the meetings will be paid. Carers Partnership Board and Learning Disability Partnership Board Forum representatives are needed to attend the Carers Partnership Board and also the Learning Disability Partnership Board meetings. If Forum members are able to attend either of these meetings would they please contact Sylvia Johnston, email: sylvia.johnston@carersrights.org.uk or telephone 01872 243531. Expenses incurred may be claimed Dates of Future Carers Partnership Board Meetings: Date Thursday 3 March 2016 Thursday 2 June 2016 Thursday 8 September 2016 Thursday 1 December 2016 Time 10.30 am 2.30 pm 10.30 am 2.30 pm 10.30 am 2.30 pm 10.30 am 2.30 pm Cornwall Carers Service can be contacted at 2 Princes Street, Truro TR1 2ES Tel: 01872 266383. Email: info@conrwallrcc.org.uk 5
Actions from Penzance Forum 26 th November 2015 Forum: Issue Penzance 26.11.2015 1 Members approved the minutes of the meeting held on 3 rd September for publication 2 A member asked for his thanks to be passed to Jane Richards, CSW for the exceptional help she d given him 3 Respite care that can be provided by Shared Lives was discussed. Members would like clarification of the care provided and it s suitability for them 4 A member raised the difficulty she was having trying to book respite care, particularly finding homes with availability 5 A member raised her concerns about the lack of communication and coordination in hospitals. In particular the delay with information transfer when moving wards or hospitals, and a lack of apparent knowledge of how to deal with patients suffering from dementia, was highlighted 6 The chair would like to invite someone to attend the January Penzance Carers Group meeting to give information about energy 7 Members discussed the benefit they had gained from a previous meeting when Graham Webster, one of the Shadow Governors for the RCHT Foundation Trust Status bid attended. They would like to explore the possibility of inviting him Carer Groups Affected MH OP/MH Solution Chris to arrange publication Jane will pass his thanks on to Jane Richards CCS will make enquiries to find out more about Shared Lives and update members Appendix 1 CCS will find out what the current position is with information that can be obtained from Social Services concerning availability of respite beds Jane will speak to the member at the end of the meeting to discuss formally bringing the issues to the attention of Healthwatch Cornwall. CCS to make enquiries and pass information to the chair CCS will ascertain the current status of the RCHT Foundation Trust Status bid and progress as appropriate. 6
to a future meeting. 8 A member raised concerns about the damp problems many people had in their homes at this time of year. 9 The chair raised the clash between the Forum s meeting day and other local groups such as the Memory Café and the 50+ Forum, which prevented them attending the Carers Forum meeting. Members present were happy to change the day of the Forum meeting 10 The current meeting venue was discussed, and members agreed there were issues regarding access, and traffic noise from the road outside made it difficult to hear everyone clearly 11 Copies of a recent presentation on grants and PIP/DLA given by the Carers Service at other Forum meetings will be circulated to members of the Penzance Forum Jane will enquire about any help that may be available through the Winter Wellness Campaign, and forward the information to the member Chris will check other Forum dates and aim to change the Penzance Forum meetings to a Wednesday The meeting in February next year has already been advertised in the Carers News, so will not be changed, but Chris will contact other venues to discuss possibilities for future meetings, beginning with Tesco at Penzance. Chris will arrange to circulate a copy 7
Appendix 2 ISSUE CARER GROUPS AFFECTED SOLUTION CPB ACTION Forum: Penzance Date: 26 November 2015 1 Several members expressed their thanks for the help they had received from CSWs The Forum s CPB member will highlight Forum members appreciation of the help they receive from CSWs at the next CPB meeting 2 A member raised her concerns about the lack of communication and coordination in hospitals. In particular the delay with information transfer when moving wards or hospitals, and a lack of apparent knowledge of how to deal with patients suffering from dementia, was highlighted. 3 A member raised the difficulty she was having trying to book respite care, particularly finding homes with beds available 4 The lack of community beds to provide extra care that individuals may need before going home was raised again. This is a particular problem in the area since the closure of Poltair OP/MH on 3rd December The Forum s CPB member will raise the lack of communication in hospitals at the CPB meeting on 3 rd December The Forum s CPB member will raise the lack of availability of respite beds at the CPB meeting on 3 rd December The Forum s CPB member will raise the lack of community beds available in the area at the CPB meeting on 3 rd December For noting 8