Select Committee on Work and Pensions Written Evidence


Memorandum submitted by St Catherine's Hospice

PURPOSE STATEMENT

  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 into bereavement.

  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.

AREA OF EXPERTISE IN RELATION TO OUR SUBMISSION

Social Support Services—Welfare 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 Centre—this 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 interview—during 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 the patient.

    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 interview—20 minutes.

    1.1.10    (ii)  Call Centre called claimant and conducted interview for up to one hour, requesting very detailed information—often 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 Focused Interviews.

    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.  EVIDENCE—PATIENT CASE STUDIES

  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 form—informed 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 rehabilitation—she 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 Income Support.

    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 the claim.

    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 into care.

    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 payment.

    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 be.

    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 post IS10.

    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 IS10—even though this had been posted and faxed! HOSPICE telephoned Income Support Worthing who confirmed they had not got the form or the fax—HOSPICE faxed it again. HOSPICE telephoned afterwards to confirm they had received it—which they had.

    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 Hospital—fluid on both lungs, concern for his life. Telephoned Jobcentre several times but unable to get through—line 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 distress—Redhill 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 dispatch one.

    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 claim—not yet awarded—waiting for confirmation of Carers Allowance award.

    2.5.11    07.01.04  Income Support awarded—although 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 answer—in effect—is 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 certificate—even 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.

    2.6.18    13.09.05  DSS had not telephoned Patient 2.

    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 people—claim 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 telephone—not answered).

    2.6.24    20.09.05  Telephoned Bognor Regis; spoke to male clerk who advised that claim had been passed for payment.

    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 Centre—long wait; went through initial interview—20 minutes—advised 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 December 2005.

    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 Jobcentre—Work Focused Interview postponed.

    2.7.11    25.11.05  Benefit now in payment.

    2.7.12    Observation:  Patient 7 has DS1500—special 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 unaided—his health is deteriorating.

    A special extension has been added to his home—and his wife does all his care.

    Despite the above facts, Patient 8 is still pursued to update his benefits claims. His health will not improve—it will only deteriorate.

    2.8.2    29.09.05  The HOSPICE completed a Council tax benefit claim—to 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 call—ringing tone for 27 minutes—no answer —gave up

    21.09.05:  1 x call—ringing tone for 20 minutes—no answer—gave up

    22.09.05:  1 x call—ringing tone for 40 minutes—no answer—gave up

    23.09.05:  1 x call—ringing tone for 5 minutes—telephone answered—confirmation 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.  EVIDENCE—CARER CASE STUDIES

  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, Preston.

    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 Preston—acknowledging 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 form—Toni 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 times.

    3.1.8    15.11.04  Carer 1's employer received a request for details of salary—form returned.

    3.1.9    29.11.04  Carer 1 received a letter informing her that Carers Allowance had been awarded with effect from 22.11.04—but 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 01.10.04—dispute over salary information.

    3.1.11    Original salary query form was faxed to employer—amended and returned to Preston.

    3.1.12    Received further letter advising that Carers Allowance now to be paid from 04.10.04—but not being paid until 14.02.05.

    3.1.13    Five months after applying for Carers Allowance, Carer 1 was to get her Carers Allowance—five months without her salary of £1,500 per month—all because of the work focus interview which she did not require as she had given up her employment to care for her husband—and 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 Allowance—months of tears and frustration for £25.40 per week.

    3.1.15    Carer 1 would prefer to be employed and for the State to provide the care her husband needs.

4.  EVIDENCE—BEREAVEMENT CASE STUDIES

  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 system.

  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 October 2005.

    4.2.3    Observation:  Unnecessary telephone time, cost of telephone call, cost of producing appointment and cancellation letter.

5.  OBSERVATIONS

  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 poorly—and 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 Interview—unfortunately 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 claim—it 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 died.

6.  RECOMMENDATIONS

  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.

  6.2  Recommendations.

  The Guidance Notes for Medical Practitioners about the DS1500 Report Form (Appendix 4) state:

QUOTE

    The Special Rules are for people who are terminally ill.

    What we mean by terminally ill.

    The Special Rules are for people who are terminally ill if:

      —  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.

UNQUOTE

    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 interview.

    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 ataxia.

      6.2.5(v)      Chronic inflammatory Demyelinating Polyneuropathy.

      6.2.5(vi)      Multi-system Atrophy (progressive neurological disorder—complete break down of the nervous system.

      6.2.5(vii)      Hunters Syndrome.

  These people will not improve—they will only deteriorate.

  HOSPICE recommends that mechanisms are introduced to ensure that carers and bereavement claimants are exempt from Work Focused Interviews.

7.  GOVERNMENT WORK FOCUSED INTERVIEWS—CONCESSIONS FOR CARERS (LASA REVIEW—APPENDIX 5)

  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.



 
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