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28 November 2017
Present:
Apologies: Helen Phelan apologised via Siobhan that her alternative was also unable
to attend, Brian Reynolds, Cllr Cuffley, Lisa Murphy.
As Helen Phelan was unable to attend, SC proposed that the Terms of Reference be
dealt with at Point 8. Board agreed.
P5 amend to “1–to-1 sessions in Tesco are very good. She (JK) knows of Young
Carers in her daughter’s school who are not receiving support.
Action Log
Mike Smith asked for clarification on Carers Grant used for occasional weekend
away. Can the Board ask Helen Duncan? It is a time sensitive issue for several
others.
Item 27: Blue Badges – SC said GL had raised this in September. Carol Williams
spoke to officer in charge (Kim Shaw). Using the online option is preferred. Can do
assisted applications by phone or at a library. The phone number will be put on the
website.
Stewart De Prochnow says the paperwork that is sent out should contain all this
information.
Mike Smith on Blue Badge asks why they have Blue Badge sign on the back.
Heather Davison says it is because parents don’t want a picture of their disabled
daughter on the windscreen as it is distasteful.
Item 35: On the right staff member to speak about operational matter. SC reported
that HDu is happy to support where she can. For particular localities the Board
should consult Clair Bruin.
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Item 37: LM - figures will be provided in his April 2018 report as agreed on the 3rd of
October.
Item 38: LM – a Task and Finish Group was held on the 20th of October to look at
Carers Strategy. Representatives from CCG and Peterborough, Carer’s Trust and
Centre 33 as well as SH and KC attended.
Overall the group was content with the strategy but highlighted the following gaps:
The important role of caring effect on siblings, breaks for carers, mental health of
young carers. The updates should be circulated in about a week.
LG added the strategy should include end of life care. Carers Hubs asked for a more
focussed version of the strategy.
Item 39: LG circulated her report. Jan-Oct Carers Trust carried out 548 new
assessments and 615 reviews.
SdP - on GP appointments. Told if one wants to raise more than one issue you
should ask for a multi-issue appointment. CCG was asked by SdP. It is a practice
particular issue.
HD – this does come up. She will take this back that GPs should make this
information clearer. Healthwatch provides feedback every 2-3 months to the Clinical
Commissioning Group (CCG).
None.
5. End of Life care, Liz Webb Director of Clinical Services, Senior Nurse for
Arthur Rank Hospice
Arthur Rank Hospice (ARH) since 1983 supporting people with end of life
services, community based dissemination.
Young adult support, Dementia support, Neurological conditions support and
Complex Care needs.
Short stay unit that deals with a complete care review or those who are dying
with some complexities that can be managed at home. 9 additional beds in
partnership with Addenbrooke’s shall be opened.
Look at the person as a whole with their carers, family members.
Hospice at Home night care provision.
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Central referrals and clinical triage point number can be called and referral to
other services (usually done by GP).
Specialist nurses team looks at about 1000 nurses at home.
200-300 people per year day therapy
Lymphoedema unit.
Bereavement and Psychological Support Service only accessible to families
and patients who are under their care.
Work in conjunction with already existing service and don’t barge in and
shake-up support system that is there.
Try to influence CCG etc.
Liz Webb says they have end of life beds, admission to the Trafford Ward can be
accessed. In Wisbech the Alan Davison treatment centre refurbishment will be a
satellite of the Arthur Rank Hospice Centre. It is complicated by the fact that QEMC
provides medical treatment to the surrounding area.
Kadie Chapman asks Liz Webb about access and initiative for access.
Liz says that as it is not something people often go through their GP needs to be
involved. Home hospice support helps people feel reassured about their care.
Liz says CCG go round in houses and there is a Carer Representative (name
escapes her) regarding Lee’s question.
Sue talks to Liz regarding how and when her friend waiting for a heart transplant
accessed ARH service.
Liz on working with existing care structure in new facility and young adults who have
come for a review on this says that the space accommodates this.
Laura Green on overnight care to Liz: Liz says that there is a nurse in a car overnight
when capacity is stretched (1/3 of overnight care is not met).
Heather elaborates that her daughter has a lifetime award. Although she used to
work for DISH it is still difficult to go through the process.
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Sue has done her husband’s award and her daughter’s and her own was bad
enough.
Mike Smith works at MS Therapy Centre in March. They’ve stopped doing everything
there as they are terrified they will get everything taken away.
Sabi asks: DIAL in Norfolk for appeals. Northwest Norfolk service based in King’s
Lynn.
PIP invitation window gone. DWP to the best of his knowledge haven’t announced a
new window or programme.
The crucial form is the claim form, which must be submitted to DWP within 3 weeks.
Extenuating circumstances merit extension.
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Jackie King says face to face meeting with children isn’t necessary.
Mike Smith says secondary assessment is needed with progressive diseases and
they don’t get more up-to-date information. MS gets progressively worse. At
assessment he couldn’t carry his wife upstairs and there was no lift. Sue knows
someone who was unable to go up the stairs and was marked as not attending.
Heather and Kadie mentioned their children who have limited or no verbal
communication.
Jackie King if you need evidence from GP ensure you book a double appointment.
SM - County Council has a Welfare Benefits Team which helps fill out forms.
Peter calls this “reworking”, a decision that appears to have been made. There are
bullet points on the assessment and on the back an appendix of assessment
recommended. The decision-maker rubber stamps this document. Unless
information is consistent with the evidence, in which case Capita reworks the case.
Peter doesn’t know how often it is used but it has been done in a few cases. He
doesn’t see it done to the advantage of the carer.
Mobility component – formerly the High rate mobility component was awarded if you
were unable to walk in excess of 50m. With PIP this has gone and in order to get the
enhanced rate you must show that you cannot walk more than 20m. If you can walk
50m you will be entitled to the Standard Rate of the Mobility component. You are
only eligible for a Motability vehicle if you are awarded the Enhanced Rate. The test
should be repeated and not a one-off.
Such cases are taken to tribunal. It’s better not to tick the box marked 20-50m.
Tribunal will not hold you to that if you say you didn’t understand this.
Mike Smith says Penny Mordaunt MP (before she moved International Development)
was sympathetic to this and asked for cases whereby if the frequency of the
incidence of harm is greater than 50% is being abolished and is a very positive step.
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Joseph says it has to be a cognitive issue for planning (medication and treatment)
then it has to be more than 3.5 for one point.
Peter - you get a point for prompting assistance of medication, which must be
supported by a medical practitioner. With autistic cases, case-law requires treatment
to be administered at sites. Remember that if you get a fixed award of 3-5 years you
will get another invitation and don’t miss it. People who have a Fixed period living
awards should not sit back. Atos and Capita are backed up with assessment.
Approach the DWP. Take the initiative.
8. Terms of Reference
Sally registers thanks for task and finish group and for those who sent in their ideas.
Jackie King - asked if any relevant points that came up during meetings should be
fed back via the Pinpoint partners in commissioning meetings, Siobhan clarified that
this wasn’t necessary as would be fed back via the SEND performance board.
10. AOB
Date for next meeting Sally Cleghorn had received a request for this meeting
focussing on young carers to be during half term when it would be easier for
them to take part, rather than first Saturday of February. She proposed 13
February. SC hopes Centre 33 and CTCPN will be able to work together on
this meeting.
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At short notice Henrietta Curzon (hcurzon@impower.co.uk) of iMPOWER
Consulting asked to speak to Carer Representatives at their pre-meeting.
iMPOWER is carrying out a survey of Adult Services for Cambridgeshire
County Council and is keen to speak to individual service users and carers.
There will be three public events in January.
HD asked whether they have spoken to Healthwatch, CTCPN or Pinpoint as they are
already in week four of the survey. Henrietta took the details.
June 12 10.30am – 12.30pm Orchard Park Community Centre, Cambridge CB4 2EZ
July 31 1:30pm – 3:30pm Focus on Young Carers, Papworth Everard Village Hall,
Ermine St North Papworth Everard CB23 3RD
October 2 10.30am – 12.30pm Orchard Park Community Centre, Cambridge CB4 2EZ
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