Memorandum submitted by St Catherine's
We work in partnership with other health professionals
to provide specialist palliative care for people with advanced
progressive disease that is no longer responsive to curative treatment;
this includes supporting their families and carers and extends
Care is provided in response to a specific need
that is identified by the multi-professional team and can be provided
both directly by the HOSPICE team and indirectly through advice
and support to other health professionals.
Social Support ServicesWelfare Department
The Welfare Department provides advice and support
on a wide range of topics linked with Benefits, Health Authority
and Social Services support. This help is available throughout
the patient's illness whether the patient is being cared for in
the HOSPICE or at home. The department also assists families,
should it be necessary, with registering a death, funeral arrangements
and advice on probate.
The service is provided by an experienced advisor
from Monday to Friday and is offered to all patients and their
relatives/carers receiving support and care from St Catherine's,
whether as an inpatient, day patient or in the community. The
number of patients assisted per year is 300+. The number of sessions
provided each year is 3-4 per patient/family depending on complexity
and the majority of families receive further advice regarding
bereavement benefit claims.
1. PROBLEMS ENCOUNTERED
1.1 Access to Call Centre
1.1.1 Over the period we monitored it
took anything from a few minutes to one hour and six minutes (an
average of 24 minutes) to get through to the Call Centrethis
involved time, cost and distress to the patient and family.
1.1.2 Having made this initial contact,
it has taken days/weeks before the Call Centre contacted the individual
for a full telephone interviewduring which time the individual
was left without benefits
1.1.3 It has often been the case that
following the initial interview the follow-up contact was not
made without the claimant having to chase the Call Centre
1.1.4 The length of the interview and
the information required was often tiring and distressing for
1.1.5 Inexperienced call centre staff
did not understand about serious or terminal illness and the implications
of the DS1500.
1.1.6 Call centre staff who insisted
on Work Focused Interviews when claimants were already employed.
1.1.7 Call centre staff who insisted
on Work Focused Interviews when claimants had given up employment
to be a carer.
1.1.8 Call centre staff who insisted
on Work Focused Interviews when claimants had taken unpaid leave
to be a carer.
1.1.9 Having telephoned the Hastings
Call Centre it could be overloaded and claimants ended up talking
to Job Centre staff in places as far away as Dundee, Scotland.
1.1.10 A percentage of claims went astray
because of the amount of times the claim was handled before payment
was made, eg:
1.1.10 (i) Claimant telephoned Call
Centre for initial interview20 minutes.
1.1.10 (ii) Call Centre called claimant
and conducted interview for up to one hour, requesting very detailed
informationoften when the claimant was in pain, nauseated,
breathless, tired or fatigued.
1.1.10 (iii) Claimant was sent an
interview assessment to check and verify.
1.1.10 (iv) Claimant sent or took
assessment to the local Job Centre Plus together with the information
requested, as instructed on form JCP5 12/05.
1.1.10 (v) Job Centre Plus then
returned assessment for clearance/payment to nominated Centre.
1.2 Visit to local Member of Parliament
1.2.1 On 12 November 2004 the HOSPICE
Welfare Coordinator visited the local MP (Laura Moffat) with 16
client files illustrating problems encountered with access to
the call centre, incorrect and delayed benefit payments and Work
1.2.2 No improvement followed this visit.
1.3 Evidence: The following is a cross section
of patients who have experienced difficulties in claiming benefits.
2.1. Patient 1: A 63 year old
gentleman suffering from diffuse gemistocytic Astrocytoma intermediate
grade (brain tumour).
2.1.1 In receipt of Disability Living
Allowance under Special Rules.
2.1.2 17.07.04 Called into
Crawley Jobcentre Plus office to collect an Incapacity Benefit
SC1 claim forminformed no longer available from them, these
must now be requested through central Call Centre.
2.1.3 July 2004 Telephoned Call
Centre on numerous occasions but unable to get through. Got through
eventually, after waiting over 10 minutes for them to answer.
Told they could not talk to St Catherine's because of the Data
Protection Act and also insisted on a Work Focused Interview for
Patient 1. We explained this gentleman had terminal illness and
would be unable to attend this interview. We made a complaint
but unfortunately as the manager was not there, we left our telephone
number to await a call back.
2.1.4 July 2004 The next day we
received a call from the manager, David Gonsalves; discussed with
him Patient 1's inability to sit in our office whilst we waited
to get through to the Call Centre; long discussion and agreed
that if we sent authorisation letters in advance signed by patient
giving us authority to deal on their behalf, they would then be
able to talk to us.
2.1.5 July 2004 In this instance,
we managed to get Patient 1 to the ward office and called Mr Gonsalves
on his direct line. He then passed us on to someone else to deal
with. Partially completed over the 'phone (call took 37 minutes)
and then sent to Patient 1.
2.1.6 29.07.04 Patient 1 received
claim form to complete.
2.1.7 Following the conversation with
Mr Gonsalves, the back to work interview was cancelled.
2.1.8 Observation: This terminally
ill man, who could not stand unaided, with poor memory, slurred
voice, problems with retrieving words and who, in retrospect,
had 47 days of life left, was made to suffer the indignity and
embarrassment of trying to speak on the telephone when he couldn't
remember his words.
2.2 Patient 2: A 31 year old
lady with breast carcinoma with cervical lymph node, lung and
bone metastases (breast cancer with secondary cancer). Patient
2 had problems with pain control, had been in and out of hospital,
and had been referred to the HOSPICE for rehabilitationshe
had unsuitable accommodation as she was living in a shared house
with use of one room.
2.2.1 In receipt of no benefits.
2.2.2 03.08.05 Patient 2 came into
our office so we could telephone Call Centre to obtain Income
Support form. Managed to get through straight away - they insisted
on speaking to Patient 2 and asking all the Call Centre questions,
including when she would be returning to work, (Patient 2 having
just been informed her disease was terminal). Call centre staff
insisted she attend a Work Focused Interview in order to receive
2.2.3 On intervention by St Catherine's
HOSPICE, the Call Centre staff delayed the interview until 2 November
2004. However, it was extremely delicate and upsetting for Patient
2 as the HOSPICE had to talk to a third party about her short
life expectancy in front of her.
2.2.4 09.08.04 Patient 2 received
her claim form. Unfortunately, Patient 2's health continued to
deteriorate and due to transfer to more suitable accommodation,
it was difficult to obtain the required information to complete
2.2.5 10.09.05 The HOSPICE Patient
Welfare Coordinator took the completed claim form, with most of
the information, to Horsham Benefits Agency, within the time frame
allowed. However, with the new system of security officers barring
the way, he made reference to Patient 2 having to bring the claim
form herself! Fortunately a Benefits Agency Officer from the Crawley
Agency, who knew HOSPICE Patient Welfare Coordinator, intervened
and accepted the claim.
2.2.6 October 2005: The HOSPICE
regularly chased this claim through the Crawley Benefits office
and it appeared that sometime in October, forms had been sent
to her employer.
2.2.7 12.11.04 The HOSPICE chased
the claim again, this time through the Worthing Office and they
had still not had a reply from Patient 2's employer. We asked
that they fax a copy of this form to us, which they did, and it
was passed on to a friend of Patient 2 to give to the employer.
2.2.8 01.12.04 Patient 2 was awarded
Income Support from 3 August to 3 November 2004. Benefit cannot
be paid after this date, until the employer completes the SSP1
form, the patient having completed the SC1 form.
2.2.9 Observation: This young lady
with dreadful pain was made to sit in on a telephone conversation
which was discussing the terminal aspect of her illness. The delay
in sorting out payment of Income Support added to her worries
considerably and without the help and support of the HOSPICE Welfare
Department, would probably still not have received any benefit
Income support was finally awarded on 2 December 2004. This young
lady died on 9 January 2005. Incapacity benefit claims were ongoing
and settled after her death.
2.3 Patient 3: A 35 year old
deaf lady with non-Hodgkin's Lymphoma (a type of cancer) and mild
learning difficulties referred to the HOSPICE on 17 June 2004
because she could not cope with the benefits system, her health
and her family problems. She is a single mother whose children
had been taken into care because she could not cope. There was
confusion over her benefits because the children had been taken
2.3.1 On 3 June 2004 Patient 3 had been
sent a claim form for Disability Living Allowance from the Benefits
agency at Sutton, Surrey.
2.3.2 05.07.04 Patient 3 brought
her Disability Living Allowance claim form to the HOSPICE and
was assisted to complete it.
2.3.3 13.07.04 Patient 3 telephoned
Income Support at Worthing to inform them her children were in
foster care and she was told her benefit had been overpaid.
2.3.4 26.07.04 Disability Living
Allowance was awarded backdated from 3 June 2004. Although, Income
Support had informed Patient 3 that she was being overpaid, they
continued to pay her the same amount.
2.3.5 29.07.04 HOSPICE visited Patient
3 when she signed a letter authorising HOSPICE to deal with her
claim for Income Support as she was worrying so much about it.
2.3.6 03.08.04 Patient 3 telephoned
HOSPICE as there was no money in her account. HOSPICE telephoned
Income Support at Worthing to inform of Patient 3's situation
when HOSPICE was informed that Income Support was not in payment
and was probably in the collection department because of the over
2.3.7 06.08.04 HOSPICE prepared
and sent a letter to Worthing outlining Patient 3's position
with DLA being awarded and suggesting what her payment should
2.3.8 10.08.04 Telephoned Income
Support Worthing and was on hold for 25 minutes without having
spoken to a clerk; gave up trying.
2.3.9 12.08.04 Patient 3 called
HOSPICE to say that Income Support had been re-instated. However,
it did not include the Severe Disability Premium which she was
entitled to as she was in receipt of Disability Living Allowance.
She had received form IS10 to apply for this Premium. She also
received an Incapacity Benefit form.
2.3.10 13.08.04 HOSPICE Patient
Welfare Coordinator visited Patient 3 at home to complete and
2.3.11 16.08.04 Completed Incapacity
benefit form and posted to Bognor Regis with medical certificate.
2.3.12 31.08.04 Patient 3 received
a second IS10 to complete with a letter stating they had not received
the first one back. HOSPICE telephoned Worthing to inform them
the IS10 had been returned to them on 13 August and also faxed
a copy to Worthing.
2.3.13 10.09.04 Received telephone
call from Patient 3: she had telephoned Worthing to chase payment
of this premium and was told that they still had not received
the IS10even though this had been posted and faxed! HOSPICE
telephoned Income Support Worthing who confirmed they had not
got the form or the faxHOSPICE faxed it again. HOSPICE
telephoned afterwards to confirm they had received itwhich
2.3.14 29.09.04 It was finally confirmed
that her correct benefit was in payment.
2.3.15 Observation: This lady has
had her children taken away as her illness does not allow her
to look after them, she suffers from nausea and vomiting, pain
and breathlessness and had to go through all the above to receive
the correct level of benefit.
2.4 Patient 4: A 44 year old
man, with a 12 year old daughter living with him, suffering from
carcinoma of the colon (colon cancer) (April 2002), second diagnosis
of Myelodysplastic Syndrome (a disease in which the bone marrow
does not function normally, affecting the production of all three
major types of blood cells: red blood cells, white blood cells
and platelets). Bone marrow transplant (November 1999). Patient
4 was optimistic about a cure but received bad news on 15 October
2004 that his disease was terminal.
2.4.1 24.09.04 Spoke with his Job
Centre Personal Advisor on 24 September 2004, and it was agreed
that, because of his illness, his compulsory Personal Advisor
meeting would be postponed.
2.4.2 02.11.04 Patient 4 received
a letter saying he had to attend a meeting on 15 November 2004
with his Personal Advisor with a threat that his Income Support
was likely to be affected if he did not attend.
2.4.3 04.11.04 HOSPICE Patient Welfare
Coordinator visited the Jobcentre Plus to explain his situation
and the meeting was cancelled.
2.4.4 07.12.04 Patient 4 informed
HOSPICE he had been awarded Disability Living Allowance under
Special Rules. However, he had not been informed that he had been
given the Enhanced Disability Premium of Income Support. HOSPICE
chased this up.
2.4.5 09.06.05 Patient 4 received
another letter to attend a Work Focused Interview on 23 June 2005.
Patient 4 was extremely ill in East Surrey Hospitalfluid
on both lungs, concern for his life. Telephoned Jobcentre several
times but unable to get throughline always busy.
2.4.6 14.07.05 HOSPICE telephoned
Jobcentre at Redhill and advised them again of Patient 4's terminal
illness; suggested it was pointless to send Work Focused Interview
appointments, causing patient and family extreme distressRedhill
delayed the interview date until 2008.
2.4.7 20.07.05 Patient 4 died.
2.4.8 Observation: Throughout the
terminal stage of his illness Patient 4 was pursued relentlessly
to attend pointless work focused interviews.
2.5 Patient 5: A 59 year old
man who has given up work to look after his 88 year old mother
who is suffering from carcinoma of the right lung (lung cancer).
He is the only child.
2.5.1 25.10.04 HOSPICE advised Patient
5 to call the Hastings Call Centre. HOSPICE also advised him to
agree to a work focused interview, if offered, in order to expedite
his claim as he has no income.
2.5.2 25.10.04 During this call
Patient 5 was given incorrect information by the Call Centre who
advised him he could not apply for Carer's Allowance unless HE
was in receipt of Attendance Allowance, when, in fact, it is the
person he is caring for who should be receiving Attendance Allowance.
2.5.3 Patient 5 telephoned the HOSPICE
when he was advised to call the Call Centre again and explain
that it is his mother who is in receipt of Attendance Allowance,
and therefore he is entitled to claim both Carer's Allowance and
Income Support. After answering a multitude of questions, he was
informed he would be sent an Income Support pack and a Carer's
Allowance pack. Patient 5 subsequently received a Carer's Pack
2.5.4 03.11.04 HOSPICE Patient Welfare
Coordinator visited Patient 5 at home and helped him complete
the Carer's claim form and, as he had not received the Income
Support pack, telephoned the Call Centre again who said they would
2.5.5 08.11.05 Patient 5 received
an Income Support pack dated 4 November 2004.
2.5.6 09.11.04 Patient 5 received
an Income Support pack from Belfast dated 25 October 2004!
2.5.7 10.11.04 Patient 5's completed
Income Support claim was taken to Crawley Jobcentre Plus.
2.5.8 07.12.04 Patient 5 received
a letter awarding Carer's Allowance from 6 December 2004.
2.5.9 08.12.04 Patient 5 had still
not been awarded Income Support.
2.5.10 31.12.04 Visit to Crawley
Jobcentre Plus to chase Income Support claimnot yet awardedwaiting
for confirmation of Carers Allowance award.
2.5.11 07.01.04 Income Support awardedalthough
incorrect starting date.
2.5.12 Observation: Patient 5 accepted
a Work Focused Interview for 3 January 2005 in order to process
his claim. When the DSS interviewer is asking the question when
can Patient 5 return to work, the answerin effectis
when my Mother dies or goes into care. This can be very distressing
for the claimant. The claim started on 25 October 2004 and payment
was received on 7 January 2005.
2.6 Patient 6: A 57 year old
gentleman with Metastatic carcinoma of the oesophagus with liver
secondary (cancer of the oesophagus [gullet] with secondary cancer
of the liver).
2.6.1 14.04.05 Date on which Patient
2 last worked.
2.6.2 28.04.05 Patient 2 referred
to St Catherine's HOSPICE.
2.6.3 06.05.05 Patient 2 requested
help from HOSPICE Welfare Team.
2.6.4 06.05.05 GP issued DS1500
form; Patient 2 terminally ill.
2.6.5 06.05.05 Requested Disability
Living Allowance application forms.
2.6.6 18.05.05 Assessed by HOSPICE
Doctor and accepted for care. The following is a timetable of
events for applying for benefit.
2.6.7 20.05.05 Telephone interview
with Hastings Call Centre.
2.6.8 27.05.05 Received and amended
11 page interview assessment re claim for Incapacity Benefit.
2.6.9 03.06.05 Returned interview
assessment to local Jobcentre.
2.6.10 06.06.05 Disability Living
Allowance claim posted.
2.6.11 04.07.05 Request from Horsham
Jobcentre Plus re medical certificate.
2.6.12 06.07.05 Patient 2 requested
medical certificate from his GP.
2.6.13 09.07.06 GP issued DS1500
in error (second one).
2.6.14 13.07.05 Telephoned Horsham
Jobcentre Plus who insisted on medical certificateeven
though DS1500 had been issued and Disability Living Allowance
awarded under special rules.
2.6.15 20.07.05 Medical certificate
taken to Horsham Jobcentre Plus.
2.6.16 12.09.05 Patient 6 had not
received Incapacity Benefit.
2.6.17 12.09.05 Telephoned Horsham
Jobcentre Plus who would not discuss the claim in line with Data
Protection Act. Horsham Jobcentre Plus will telephone Patient
2.6.18 13.09.05 DSS had not telephoned
2.6.19 13.09.05 Telephoned Bognor
Regis area Incapacity Benefit office who had no record of claim.
2.6.20 13.09.05 Telephoned Horsham
Jobcentre Plus; conversation with several peopleclaim being
sent to Bognor Regis 13.09.05.
2.6.21 19.09.05 No payment received.
2.6.22 19.09.05 Telephoned Bognor
Regis; put through to Hastings Call Centre who said that the claim
had been passed for payment, but that arrears had not been paid;
advised to speak to Bognor Regis.
2.6.23 19.09.05 Telephoned Bognor
Regis (25 minutes wait on telephonenot answered).
2.6.24 20.09.05 Telephoned Bognor
Regis; spoke to male clerk who advised that claim had been passed
2.6.25 Observation: Incapacity Benefit
finally paid on 26.09.05. (Patient 2 started claim in early May
2005 and waited five months for Incapacity Benefit to be paid.)
2.6.26 13.10.05 Patient 2 received
IB50 (incapacity for work questionnaire) to look at whether Patient
2 could do a different type of work, ie personal capability assessment.
2.6.27 17.10.05 Telephoned Incapacity
Benefits at Bognor Regis; waited 27 minutes; informed clerk that
Patient 2 was terminally ill and has DS1500; clerked insisted
that the form be completed and requested second DS1500. Telephoned
advice line and local Jobcentre advised should not have received
IB50. The IB50 was completed and returned with DS1500 to prevent
further problems arising with future payments for the patient.
2.6.28 04.10.05 Mrs S (carer and
partner of Patient 2) received her SSP1 transfer form. Telephoned
Hastings Call Centrelong wait; went through initial interview20
minutesadvised by Call Centre that no benefits available
as she was getting carers allowance.
2.6.29 04.10.05 St Catherine's HOSPICE
Welfare Coordinator informed Hastings Call Centre that Mrs S was
entitled to Incapacity Benefit as well as carers allowance, ie
the higher of the two benefits. The Call Centre clerk advised
that he would "over-ride" the computer system and send
a clerical claim form. This was completed and returned on 1st
2.6.30 Observation: If Mrs S had
not been given the advice from the HOSPICE, she would have been
losing some £19+ per week.
2.7 Patient 7: A 59 year old
gentleman diagnosed with non small cell lung cancer.
2.7.1 23.09.05 Received SSP 1 transfer
form from employer.
2.7.2 23.09.05 Telephoned Hastings
Call Centre on and off throughout the day.
2.7.3 26.09.05 Treatment all day
at Guildford Hospital. Telephoned Hastings Call Centre between
4.00 pm and 6.00 pm several times.
2.7.4 27.09.05 Telephoned Hastings
Call Centre from 4.50 pm to 5.00 pm.
2.7.5 27.09.05 Patient 7's wife
went to Jobcentre and was informed that contact had to be made
through the Call Centre. Patient 7's wife informed the Jobcentre
that her husband had been trying to telephone since Friday 23.09.05
and that it was costing time and money and causing her husband
distress. The Jobcentre clerk suggested that Patient 7 could come
to the Jobcentre to use the "free line". This is impractical
because Patient 7 is undergoing chemotherapy, is unwell and prone
to infection. Patient 7's wife ended up in tears in the street.
2.7.6 28.09.05 Patient 7 tried to
telephone Call Centre from 10.30 am to 10.40 am, felt ill and
gave up trying.
2.7.7 29.09.05 Patient 7 telephoned
Call Centre; call was answered after 1 hour and 6 minutes; clerk
apologised and called Patient 7 back and interviewed him for 20
minutes (information to hand as HOSPICE has prepared an information
sheet); the Call Centre computer then "crashed" and
the clerk suggested that Patient 7 claim Pensions Credit and said
she would send a clerical claim form to claim Incapacity Benefit.
2.7.8 29.09.05 Telephone call to
Pensions Credit, and visit to local Jobcentre Plus confirmed that
information regarding Pensions Credit was incorrect.
2.7.9 12.10.05 to 17.10.05 Patient
7 in hospital.
2.7.10 04.11.05 Incapacity Benefit
claim with all information taken to the local JobcentreWork
Focused Interview postponed.
2.7.11 25.11.05 Benefit now in payment.
2.7.12 Observation: Patient 7 has
DS1500special rules indicating he has six months to live.
Therefore, why would he be expected to attend a Work Focused Interview?
2.8 Patient 8: A 48 year old
gentleman diagnosed with Motor Neurone Disease (a chronic slowly
progressive disease marked by the wasting of muscles and associated
with weakness and paralysis) on 26 July 2002.
2.8.1 Patient 8 was referred to the
HOSPICE on 23 January 2003.
Patient 8 cannot talk, feed himself, stand, walk
or move unaidedhis health is deteriorating.
A special extension has been added to his homeand
his wife does all his care.
Despite the above facts, Patient 8 is still pursued
to update his benefits claims. His health will not improveit
will only deteriorate.
2.8.2 29.09.05 The HOSPICE completed
a Council tax benefit claimto be able to complete this
claim, the Council required confirmation of Patient 8's Incapacity
Benefit (even though they had his bank statements).
2.8.3 To get this information, the HOSPICE
made four telephone calls to get through to the Incapacity Benefits
office as follows:
21.09.05: 1 x callringing tone for 27 minutesno
answer gave up
21.09.05: 1 x callringing tone for 20
minutesno answergave up
22.09.05: 1 x callringing tone for 40
minutesno answergave up
23.09.05: 1 x callringing tone for 5 minutestelephone
answeredconfirmation received on 27.09.05.
2.8.4 Observation: The "knock
on" effect of the work focus interview system is that the
office dealing with the claims gets calls because claimants cannot
get through to the Call Centre.
3.1 Carer 1: A 58 year old lady
who gave up work as an Auxilliary Nurse at the HOSPICE on 1st
September 2004 to care for her disabled husband who has cerebellar
ataxia/Friedreich's ataxia (progressive deterioration of the nervous
system, causing an inability to coordinate voluntary muscle movement).
3.1.1 12.09.04 The HOSPICE completed
a claim for Carers Allowance and posted it to Palatine House,
3.1.2 14.09.04 Carer 1 received
a letter from Preston returning the documents.
3.1.3 15.09.04 Carer 1 received
a letter from Prestonacknowledging receipt of claim form.
The letter was also advising of Work Focused Interview
and advising that Carer 1 may be required to attend a meeting
with a Personal Adviser.
Carer 1's claim had been passed to a Jobcentre Plus
Contact Centre (Hastings).
3.1.4 13.10.04 Jobcentre Plus sent
a second claim form to Carer 1, and advised that Jobcentre Plus
aims to help improve chances of finding work.
3.1.5 13.10.04 Letter from Jobcentre
Plus stating "during your recent contact, information given
suggests you MIGHT BE ENTITLED TO CARERS ALLOWANCE"letter
also enclosed a claim pack (third one).
3.1.6 20.10.04 Telephoned Call Centre
(spoke to Toni) to advise that Carer 1 had completed claim form
on 12.09.05, the claim was received at Preston on 13.09.05 and
the documents were returned to Carer 1 on 14.09.05. Carer 1 was
informed not to complete a further formToni would track
down the original form. Carer 1 advised Toni that a Work Focused
Interview was not required as she had a job to go back to.
3.1.7 Carer 1 was reduced to tears several
3.1.8 15.11.04 Carer 1's employer
received a request for details of salaryform returned.
3.1.9 29.11.04 Carer 1 received
a letter informing her that Carers Allowance had been awarded
with effect from 22.11.04but no paid until 17.01.05. (22.11.04-16.01.05
subject to query with Income Support office at Worthing.)
3.1.10 03.12.04 Telephoned Preston
to find out why Carers Allowance was not awarded from 01.10.04dispute
over salary information.
3.1.11 Original salary query form was
faxed to employeramended and returned to Preston.
3.1.12 Received further letter advising
that Carers Allowance now to be paid from 04.10.04but not
being paid until 14.02.05.
3.1.13 Five months after applying for
Carers Allowance, Carer 1 was to get her Carers Allowancefive
months without her salary of £1,500 per monthall because
of the work focus interview which she did not require as she had
given up her employment to care for her husbandand her
job was being held open for her.
3.1.14 Observation: Carer 1 had
months of telephone calls (each time the Carer 1 and the HOSPICE
telephoned the Call Centre we spent ages hanging on only to speak
to someone different every time we go through), letters awarding
Carers Allowance, cancelling Carers Allowance, re-warding Carers
Allowancemonths of tears and frustration for £25.40
3.1.15 Carer 1 would prefer to be employed
and for the State to provide the care her husband needs.
4.1 Bereaved Carer 1: A 67 year
old gentleman, in receipt of state pension, occupational pension
and is also working part time.
Wife died on 18 September 2005.
4.1.1 23.09.05 Bereaved Carer 1
telephoned the Call Centre to claim the bereavement payment. The
Call Centre clerk agreed he was entitled to make a claim but insisted
he attend a work focus interview even though he was retired and
in receipt of a state pension, occupational pension and had a
part-time job. Bereaved Carer 1 eventually agreed to work focus
interview on 6 October 2005, which he subsequently cancelled.
4.1.2 Observation: This was a totally
unnecessary exercise and a waste of time, causing distress to
the recently bereaved claimant and adding more congestion to the
4.2 Bereaved Carer 2: A 59 year old
gentleman, whose wife died on 29 September 2005.
4.2.1 06.10.05 Telephoned Hastings
Call Centre to register for Bereavement Allowance and payment;
telephone waiting time 21 minutes. After a 20 minute interview
it was agreed that Bereaved Carer 2 qualified for bereavement
benefits and that a form would be sent to him to complete. However,
the Call Centre interviewer insisted that Bereaved Carer 2 had
a work focus interview and could not seem to understand that an
interview was not necessary as Bereaved Carer 2 was fully employed
as the local Methodist minister. To close the interview because
of the cost of the call and the time taken, Bereaved Carer 2 agreed
to a postponed work focus interview for 6 November 2005.
4.2.2 09.10.05 Bereaved Carer 2
subsequently received a letter dated 7 October 2005 from Jobcentre
Plus at St Leonards on Sea confirming the date of the work focus
interview (Appendix 1)the interview was cancelled on 12
4.2.3 Observation: Unnecessary telephone
time, cost of telephone call, cost of producing appointment and
5.1 System: The system is still insisting
on Work Focused Interviews for terminally ill people, for example:
5.1.1 26.10.05 HOSPICE requested
the Call Centre to telephone a patient because the patient was
too ill to wait for the Call Centre to answer the telephone. The
HOSPICE explained that the patient was terminally ill and extremely
poorlyand also requested the possibility of a clerical
claim so that the patient would not be subjected to the lengthy
claims interview. Despite all this, the interviewer insisted on
a Work Focused Interviewunfortunately the claimant died
on 20 November 2005 (Appendix 2).
5.1.1(i) 21.11.05 HOSPICE
Welfare Coordinator visited the patient at home and telephoned
the Call Centre to establish the claimit was agreed that
a clerical form would be sent to the patient for completion as
the patient was too ill to deal with a telephone interview.
5.1.1(ii) 01.12.05 Patient
received a claim form and a letter offering a Work Focused Interview
postponed until 16 January 2006 (Appendix 3).
5.1.1(iii) 05.12.05 Claimant
6.1 St Catherine's HOSPICE would like to
include the following recommendations for action by the Government
or others which we would like the Committee to consider in its
report to the House.
The Guidance Notes for Medical Practitioners
about the DS1500 Report Form (Appendix 4) state:
The Special Rules are for people who are terminally
What we mean by terminally ill.
The Special Rules are for people who are terminally
They are suffering from a progressive
disease and, as a consequence of that disease.
Are not expected to live longer
than six months.
You should issue form DS1500 if requested by
patients (or their representatives) and you consider that the
patient may be suffering from a potentially terminal illness.
6.2.1 HOSPICE recommends that when a
claimant has a DS1500 Report indicating s/he has six months to
live they should not be subjected to the arduous and long winded
6.2.2 HOSPICE recommends there should
be a "cut off" fast track system once a DS1500 Report
has been established.
6.2.3 HOSPICE recommends that a clerical
claim via the local Job Centre Plus would be more suitable and
would produce a more rapid response.
6.2.4 HOSPICE recommends that there
should be no reference to a Work Focus Interview.
6.2.5 It is inhumane to keep sending
letters regarding Work Focused Interviews to claimants with degenerative
diseases such as:
6.2.5(i) Multiple Sclerosis.
6.2.5(ii) Motor Neurone Disease.
6.2.5(iii) Chronic Heart disease.
6.2.5(iv) Cerebellar ataxia/Friedreich's
6.2.5(v) Chronic inflammatory
6.2.5(vi) Multi-system Atrophy
(progressive neurological disordercomplete break down of
the nervous system.
6.2.5(vii) Hunters Syndrome.
These people will not improvethey will
HOSPICE recommends that mechanisms are introduced
to ensure that carers and bereavement claimants are exempt from
Work Focused Interviews.
Despite it being stated that Work Focused Interviews
would not be applicable to carers and bereavement claimants, the
Work Focused Interview practice is still being followed.