Carers Partnership Board Minutes

28 November 2017

Papworth Village Hall, 4 Ermine Street North, Papworth Everard

CB23 3RJ

Present:

KC Kadie Chapman Carer Representative

SC Sally Cleghorn Development Officer, CAIL
RC Richard Cross Carers Ambassador
HC Henrietta Curzon iMPOWER Consulting (via CCC)
HD Heather Davison Engagement Manager, Healthwatch
SdP Stuart de Prochnow Carer Representative
LG Laura Green Carers Support Manager, Carers Trust (CTC)
SH Sue Honour Chair, Carer Representative
SJR Sabi Johnson-Ratcliffe Project Support Officer, CAIL
DK Debbie King Young Carers project worker, Centre 33
JK Jackie King Partnership and Participation Officer, Pinpoint
RM Rosweeter Mandebuu Student social worker, Centre 33
SM Siobhan MacBean Service Development Manager, SEND Service 0-
25, CCC
PM Pauline Mansfield Service Manager, Making Space
EM Ella McKenzie Young Adult Carer
LMc Lee McManus Commissioner, CCC
JS Joseph Simon Carer Representative
MS Mike Smith Carer Representative
LW Liz Webb Arthur Rank Hospice
PW Peter Wetherell Disability Cambridgeshire

Fen House, Fen Road, Cambridge, CB4 1UN

Tel: 0300 111 2301 Email:admin@cambridgeshirealliance.org.uk
Registered Charity No. 1132290 Company limited by guarantee No 06861653
 1. Welcome, introductions, apologies

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.

2. Minutes from previous meeting ( 3 Oct 2017)

P1 amend Heather Duncan to read Helen Duncan.

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.

With these amendments the minutes were agreed.

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.

LM - this should be answered before the next meeting.

Action: SC to ask HDu.

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.

Action: SC will convey this information to Carol Williams.

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.

Action: SC to pursue the above.

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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.

LM executive summary and Easy Read version would be helpful.

Item 39: LG circulated her report. Jan-Oct Carers Trust carried out 548 new
assessments and 615 reviews.

Item 40: SC to circulate Stay Well report.

Action: SC to circulate Stay Well report

3. Feedback from Carer representatives

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).

4. Feedback from other meetings

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.

Heather Davison talks to Liz Webb about access to beds.

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.

Kadie asks Board if there is input to Carers Strategy.

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).

6. Personal Independence Payments (PIP), Peter Wetherell, Disability

Cambridgeshire

Asks the Board who needs help.

Mike, Joseph and Heather say they do.

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.

Disability Cambridgeshire is run on charitable donations.

Sabi asks: DIAL in Norfolk for appeals. Northwest Norfolk service based in King’s
Lynn.

Stewart asks about DSS. Peter used to be with DSS.

Jackie King invites him to Pinpoint events.

Action: Jackie to send around Pinpoint Events

PIP invitation window gone. DWP to the best of his knowledge haven’t announced a
new window or programme.

Rely on commitment and regulation on award when indefinite awards continuing. At

the point of the invitation being issued you have to make a phone call within 3 weeks
and basic details will be taken (summary of disability etc) and a claim pack will be
sent out. The claim is registered at the point of issuance of invitation.

The crucial form is the claim form, which must be submitted to DWP within 3 weeks.
Extenuating circumstances merit extension.

The process of assessment is not carried out by DWP but by Capita or

Independent Assessment Services (formerly ATOS). There is a face to face
meeting. They look crucially at the evidence you submitted with the claim form.
They cross-reference it with the actual claim document. If you don’t do this, the
claim will be assessed but it gives carte blanche to the health professional to
draw their own conclusions. It’s the extent to which the disability engages with
prescribed prescriptors. Send more rather than less evidence. If you don’t turn up
(you may only reschedule once) you lose your benefit.

Assessment centres are in Haverhill, Cambourne, Bury St Edmunds and

Peterborough. Access is difficult. Face to face appointment is to prove who you
are. Informal observations are crucial. E.g. If you drop a heavy bag and pick it up
easily, it is noted. Muscular skeletal observation. At the appeals process you are
entitled to see all the evidence. Request sight of the screens of the assessor. All
documents sent over should be scanned and sent in on screen. If you are offered
Haverhill as an assessment place, ask for Cambourne or Bury St Edmunds.

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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.

Peter Wetherell on Disability Living Allowance: It is a separate legislation. If it is

asked it is a spurious question and doesn’t have any legal bearing.

SM - County Council has a Welfare Benefits Team which helps fill out forms.

Action: Siobhan will circulate this.

Sue Honour speaks about language used on service.

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 says admission of lack of ability to walk distances is another obstacle.

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.

Set-back when Statutory Instrument 17th March removed overwhelming

psychological distress of planning journey assessment tags from descriptors. These
tags can be used still for claims made prior to March 17th 2017.

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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.

7. Richard Cross on NHS England

Due to time constraints RC kindly agreed to return at a later meeting.

8. Terms of Reference

Sally registers thanks for task and finish group and for those who sent in their ideas.

Additional statement: “In addition, the Pinpoint representative on the Carers

Partnership Board will feed any issues relating to carers of children and young
people 0-25 to the CCC Special Needs and Disabilities (SEND) Board, who will
address and feedback.”
Siobhan proposes the link should be formalised.

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.

Action: Stuart proposed adoption to include SM’s additional statement. KC

seconded.

Board agreed the Terms of Reference.

9. Adult Social Care Forum (ASCF)

 Board asked SC to raise the disappointing response to feedback to Capita
and Independent Assessment Services (formerly Atos) on poor customer
service. Board suggests ASCF should write to the two organisations.

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.

Action: Board agreed to a change of date.

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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.

Action: SC to circulate HC’s contact details to the Board.

Dates for 2018

February 13 10.30am – 12.30pm Focus on Young Carers, Garden Room, Meadows

Community Centre CB4 3XJ

April 10 1:30pm – 3:30pm Papworth Everard Village Hall, Ermine St North,

Papworth Everard CB23 3RD

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

November 27 1:30pm – 3:30pm Papworth Everard, Village Hall CB23 3RD

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