Macmillan East Sussex Welfare Benefits Service

Annual Report for2014-2015

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Introduction

This is the third annual report for the Macmillan Welfare Benefits Service for East Sussex, and it describes how the project annual has progressed in the last twelve months from June 2014 to June 2015.

The service continues to be funded by Macmillan Cancer Support and is delivered by Brighton Housing Trust and Money Advice Plus working in partnership. The geographical area covered is East Sussex, but some referrals are received from outside this area.

Both MAP and BHT have continued to evolve and change throughout the year, adapting to the environment in which they are operating with a variety of new services and funding sources. Both organisations are involved in the development of a new Advice Network for the Eastbourne area.

Funding cuts had continued to affect advice agencies adversely over the last year, resulting in a squeeze on services which are still available. Options for continuation funding for projects and services have also become more scarce, with more organisations chasing ever decreasing sources of funding, and local authorities and statutory bodies facing cuts to their budgets. Both BHT and Money Advice Plus are having to adapt their fundraising and business development strategies to look at other areas of activity such as trading, and commissioning, to support our advice activities.

Another factor which has affected our service this year has been the gradual introduction of Universal Credit across the area covered by the project. Our advisers, Steve Burns and Michele Javary, have undergone training, and although to date the number of individuals affected by the introduction of UC is small we recognise the importance of being fully prepared.

Under the original grant arrangement with Macmillan this would have been the final year of the project, and we would have expected to be rounding up the overall outcomes: however, as funding for the project has been extended for a further year, to the end of March 2016, with a possible further extension to March 2017 in the pipeline, we are instead in the position of re-marketing the service and renewing contact with our referral contacts across East Sussex.

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The Project Team

The project team consists of two advisers, one working from each partner organisation base, and a part time administrator.

Michele Javary is based at the BHT Eastbourne office. She provides telephone and face to face advice across the whole of East Sussex.

Steve Burns is based in the Money Advice Plus office. He also provides a mix of face to face and telephone advice across the whole county.

In addition the project was supported by a third adviser, Emily O’Rourke, for a few months to help cover for illness. Emily has now moved to Brighton CAB where she is working on a project supporting in patients at the Royal Sussex Hospital affected by cancer

The project administrator is Katrina Burton, who works in the Money Advice Plus office, and is responsible for making initial contact with people referred to the service, and for organising telephone appointments and home visits. Katrina also provides valuable support for the project managers, and collates the client feedback.

The project managers, Sue Hennell (BHT) and Sue Pattenden (Money Advice Plus) oversee project development and manage the team.

Meetings for the whole team are organised on a 4 weekly rota, and in addition the advisers meet up weekly to talk about how cases are progressing, to share any difficult issues and ensure the workload is evenly

Steve and Michele have again been able to access a range of training this year, some funded by the project and some directly by Macmillan education grants. Most of the training received this year has focussed on the implementation of Universal Credit.

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The Service

The aim of the service remains to provide support with welfare benefits for those affected by cancer, whether they are patients themselves, or family members or carers.

During the third year the number of clients finding their own way to our service (self referrals) has continued to rise, making up the largest group. CNS nurses continue to make referrals to us, as do other health professionals, social workers, local Macmillan services and other advice agencies.

This year 87% of the clients supported by the service have chosen to receive advice by phone, with 8% having home visits and 4% choosing face to face advice in another setting such as a hospital. Phone advice seems to work well for this client group, avoiding the necessity to travel anywhere.

Once someone makes contact with us we aim to get in touch within 24 hours to tell them more about the service and book an appointment with one of our advisers. It is usually possible to book an appointment within a week, and we try to ensure that there is never too long a wait, especially if the client’s situation requires urgent assistance.

The majority of cases taken on by Steve and Michele involve detailed casework and research into social welfare legislation. A few of these cases culminate in the advisers drafting court submissions for clients who need to challenge a benefits decision, and may require attendance in court.

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The Steering Group

The project steering group continues to meet quarterly to share good practice, provide advice and guidance, review client feedback and support the ongoing development and sustainability of the project. The membership of the steering group has undergone some changes this year mostly due to changes in members’ job roles. A continuing aim is to involve more service users in the steering group. Current membership is a follows:

Richard Longrigg, Macmillan Cancer SupportAnn Sandeman, service userMark Tolhurst, Care for the CarersClaudia Dance, Cancer team co-ordinatorAlison Payne, Social Worker attached to St Michaels HospiceSue Hennell, Project Manager BHTSue Pattenden, Project Manager Money Advice PlusJulia Cutty, representative of the local commissionersSarah Coxhill, Macmillan local communications/fundraising representative,

The project managers report to each quarterly meeting updating on service delivery, sustainability activities and any other developments; minutes are kept by the project administrator, and these are circulated and agreed by the members of the group after each meeting.

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Facts and Figures

How many people did we support this year?

Between 1st July 2014 to the end of June 2015 we have supported 485 clients, their families and carers. This compares with 364 for the first year of the service and 459 for the second year. All these clients have been assisted primarily with issues relating to welfare benefits advice.

How much money in terms of benefits have our advisers helped clients to claim?

Of the money realised for clients this year £1,572,041 is ongoing annual welfare benefit income. This compares with £1,355,137 last year.

Financial gains by type of benefit The money received by clients includes a range of benefit types and other grants. The following table shows the breakdown of types of benefit and grants achieved for clients(last year’s figures are in brackets for comparison)

Attendance Allowance £205,275 (£185,951)Tax Credits £32,160 (£38,600)Bereavement Benefit £6,568 (£17,488)Carers Allowance £40,824 (£82,363)DLA £74,680 (£136,213)PIP £660,799 (£156,399)ESA £374,814 (299,665)Housing Benefit/LHA/ Council Tax Support

£189,460 (£159,419)

Support with housing costs £1139 (£1089)Income Support £28,264 (£30,024)JSA £290 (£1096)Pension Credit £88,853 (£43,900)Statutory Sick Pay £11,583 (£27,019)Other £ 52,332 (£175,932)

Total £1,572,041 (£1,355,137)

The biggest change this year has been the huge increase in PIP payments as this new benefit gradually takes the place of DLA.

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How much did we raise in one off charitable grants and payments?

Of the money we achieved for clients this year £39,103 was in one off grants and lump sums payments. Again, last year’s figures are in brackets.

Charitable payments and grants £25,865 (£44,178)Macmillan Grants £13,238 (£8,839)

How much did the service raise overall?

Overall the total financial gain achieved by the service this year was£1,611,144 This means that for each client supported this year the service

raised an average of £3,322.

Who are the main referrers to our service?

The number of clients who self refer to us continues to rise, but CNS teams also refer many clients, along with other local Macmillan services, other advice agencies, other health professionals and social workers. Self referrals include clients given our details by the national Macmillan telephone helpline. The heading ‘information centre’ now includes the new Cancer Centre in Brighton, and we have received one referral so far. The most significant change appears to be the increase in referrals from other advice agencies, which may reflect the reduction in funding for other services resulting in a squeeze on availability. Very few referrals are coming from GPs and this may be an area to develop, bearing in mind the extension to funding.

Source Percentage of referrals

Self referrals 56%Cancer Nurse Specialists 24%Other healthcare professional

6%

CAB or welfare rights/advice agency

10%

Social worker 1%Hospital staff (non medical)

1%

Information centre 1%Primary care (GP) Less than 1%

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A profile of our clients by cancer type

As in previous years, our clients are affected by a wide variety of cancer types but the most prevalent are breast, bowel, lung, prostate, and cancers of the blood and lymphatic system. Last year we noticed an increase in the prevalence of prostrate cancer in our client group and prostrate cancer has emerged as one of the most common again this year. Breast cancer is the most common cancer type recorded, and this may reflect the fact that it can affect a significant group of women of working age and with family responsibilities, and may also reflect the strong support network in place for this group, which enhances signposting and referral to services like ours.This year we have also reported on the health issues affecting the small group of people we have supported who are not affected by cancer, as we thought this might give us some pointers for other groups needing the sort of service Macmillan funds: the conditions we have recorded include HIV/Aids, Parkinson’s Disease, and COPD.

Cancer type/health issueBreast 24%Blood and lymphatic system 9%Prostrate 9%Lung 9%Bowel 8%Liver 5%Throat 3%Bone and Cartilege 3%Pancreatic 3%Bladder 2%Oesophagus 2%Renal/kidney 2%Brain 2%Head and Neck 2%Myeloma 1%Cervical 1%Skin 1%Stomach 1%Ovarian Less than 1%Lip/oral Less than 1%Mesothelioma Less than 1%Eye Less than 1%Testicular Less than 1%Thyroid Less than 1%Uterine Less than 1%Other cancer 5%Other health issue: COPD Less than 1%Other health issue: HIV/Aids Less than 1%Other health issue: Parkinsons disease Less than 1%

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At what stage do clients receive help?

As well as looking at the types of cancer affecting our client group, we also gathered information about the stage on the cancer pathway they have reached at the time of accessing our service. Again, last year’s figures are included for comparison.

Stage on cancer pathway

Percentage of clients

Receiving treatment 50% (46%)Palliative care 7% (7%)Client not the patient 30% (19%)Following diagnosis 12% (22%)In remission 2% (2%)Pre diagnosis 0 (0)Information not available 1% (4%)

Since last year our ability to capture and record this information has improved again, as shown by the small number of cases where the information was not available. The biggest increase again this year was in cases where the person we were assisting was not the cancer patient – this may reflect a large number of cases where the patient’s affairs are now being dealt with on a day to day basis by a relative or carer, and may actually reflect that the number receiving palliative care is much higher than the figure of 7% would indicate..

Demographic profiles of our client groupUsing our web based system Advice Pro we have been able to look at demographic patterns and trends in our client group to help ensure we are reaching all the community. The reports have been used to establish the following picture of our clients:

Age group of clients As in previous years the majority of clients we have supported this year have been in the 50-70 age group. The table below sets out the percentage of clients falling into the age groups which we have tweaked this year to give a more accurate picture.

Age range % of clientsUnder 20 020-29 2%30-39 6%40-49 18%50-59 28%60-69 28%70-79 14%80-89 3%Over 89 0.5%

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The results have been rounded for convenience and may indicate that the group most in need of the support offered by our service re older working people who are at a stage in life where cancer becomes more prevalent but who have not yet reached the relative financial security of retirement. It seems likely that they are at a stage in life when financial demands of family, mortgage etc are still significant, and loss of income through taking time off work or having to give up work is going to cause significant problems and worry.However, we also need to be aware that people in the older group – those in their seventies and eighties, may not be accessing the service for a number of reasons. This year we focussed on ensuring that we were meeting all groups of the community based on ethnic data, and in the coming year the accessibility/age factor is something we need to address to check we are not inadvertently putting up barriers for older clients.

GenderA slightly higher number of women than men access our service this year, which may reflect the fact that women are more willing to seek out help and support than men. However, among the most common cancer types in our client group are those affecting mainly women, such as breast cancer. The age at which various types of cancer commonly occur may also affect this slight imbalance between men and women.

Male 45%

Female 55%

Ethnic OriginWe conducted a survey half way though this third year of the project to check that we were reaching all ethnic groups we would expect to be seeing. This involved looking at local authority data relating to the ethnic make up of the communities we serve. Our survey grew out of a concern we had that so many of the people accessing our service were white English speakers, and although we have in place access to translators we were not using this facility with the regularity we might expect.In fact our survey revealed that our clients almost exactly reflected the populations we are working in, with 96.5% being white, 0.5% Asian 0.5% Chinese, 0.55 of mixed ethnicity, and 0.25% Black. The largest minority group we found to be accessing the service were White but non English speaking EU migrants, mostly form Eastern European countries. As a result of our survey we decided we did not need to take urgent action or make changes to make the service more accessible to people from ethnic minority groups, but we decided we will approach the Eastbourne Cultural Communities Network and enquire about the possibility of going to talk about the service with group members.

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Household typeAs in previous years the most common household type clients come from is single adults (75%) followed by couples with no dependent children. This pattern probably reflects the age groups we most frequently support. However there has been an increase in the number of clients with dependent children who we have supported this year – from 3% last year to 10% this year. This may reflect welfare reform changes to benefits which are affecting a slightly younger age group disproportionately.

Household type %Single adults 75%Couples with no dependent children 15%Couples with dependent children 6%Lone parents with dependent children 4%

Housing statusThe most frequent housing status of clients we have supported this year is owner occupier (total 57%). Of these roughly half own their home outright and half have a mortgage. In previous years the biggest group has been those who own outright, and the increase in clients we are supporting who are still paying a mortgage may reflect changes in the housing market, with people taking on longer mortgage terms, with the expectation that they will be working for longer. A further 37% are in rented property, with 22% being in private rented accommodation with little security of tenure. 15% were tenants in social housing. Other clients were living with family, living rent free, and 1% reported as being homeless.

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Where do our clients live?

Postal Town Number of clientsBattle 5Bexhill 39Bishops Stortford* 1Brighton* 22Burgess Hill* 2Crowborough 1Eastbourne 138Forest Row 1Hailsham 28Hassocks* 2Hastings 42Haywards Heath* 1Heathfield 10Hove* 8Lewes 13London 1Newhaven 8Peacehaven 18Pevensey 12Polegate 10Robertsbridge 5Rye 12Seaford 38St Leonards 44Telscombe Cliffs 1Uckfield 9Wadhurst 1Winchelsea 2

Eastbourne still predominates (138), but there is a fairly broad spread across the county, particularly if Hastings, St Leonards and Bexhill clients are grouped together (135). A * denotes referrals from outside East Sussex. The number of referrals from outside the project’s geographical area (36) rose again this year: of these 30 were from Brighton and Hove.

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Feedback from Clients

This year we have continued to send out feedback questionnaires a few weeks after starting to work with a new client. Comments and statistics from the questionnaires are shared with the steering group, and remain very positive. Many of the comments received praised the advisers for their hard work and sympathetic approach:

“My adviser worked very hard to get my benefits she was wonderful, much appreciated at such a difficult time – she was very good.”

“I spoke to Steve whom I found incredibly helpful (and successful) in dealing with my claim for my Dad at a very stressful time. I have thanked him personally but wish to say that he was professional yet sympathetic – I cannot speak highly enough of him.”

Taking time to listen, and making sure people had fully understood their situation were also valued:

“The adviser spent a whole hour and was calm and concentrated and collected – made me feel he really sympathised with me and I didn’t need to feel guilty in claiming benefits. He was a good listener who left me glad and calm and freed form money worries.”

“All the advisers I spoke to were very helpful and understanding – nothing was too much trouble and they were very patient listening to all my problems.”

“Excellent – explained everything very well, took time and made sure I understood.”

The impact of anxiety on people also featured in the feedback and many clients appreciated the way the adviser could help them to regain a better perspective:

“I was very stressed out before I spoke to the adviser about my financial difficulties as I wasn’t getting much help, but ow I am getting the help I need and the things I am entitled to so things are a lot easier.”

We also asked clients about the impact of the service on different aspects of their wellbeing. The results are set out below:

YesHas the service alleviated money worries? 76%Has the service improved your emotional wellbeing?

94%

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Has the service increased your independence and choices?

94%

Case Studies

Two case studies feature in this year’s report – again they demonstrate the complexity of the situations the advisers help people with, and the constantly shifting circumstances which require ongoing support for many clients. Following the case studies are reflections on the year from Steve and Michele, the advisers, who have both had personal experiences of dealing with cancer this year.

Andrea’s story

“I moved back to the UK with my husband and two young children in the Spring of 2015, after living abroad for a number of years. My husband’s parents were getting elderly, and we decided to move back to be closer to them, and our plan was to sell our house and by a permanent home in Sussex. I gave up my job and we were all set for a new life, until my husband was diagnosed with bowel cancer and the family was suddenly thrown into an unexpected crisis: my husband had to start treatment and found the side effects difficult to cope with, meanwhile our family home was being sold, and we were living temporarily with my husband’s parents. Fortunately we had some savings but these started to diminish swiftly as we were using them to support a family of four, and had no income.

One of the nurses at the hospital where my husband was being treated suggested I contact the East Sussex Macmillan Welfare Benefits Service, because although my husband and I are British Citizens it was proving difficult to find out what, if any support we were entitled to.

I spoke to the adviser, Michele, and realised that although we are British Citizens with a legal right to reside I the UK we would also have to prove that we were ‘habitually resident’ here. This involved setting out a factual case setting our connections to the UK, and we had to have evidence to support each aspect of our case.

Luckily Michele was able to guide us in the type of evidence to gather, such as the fact that our children were enrolled in local schools, that we had elderly parents in the local area, that my husband was receiving treatment and that I had given up my job and had a real chance of being employed here. We also had to prove that our home was for sale and we were intending to buy a

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house here. Trying to gather all the paperwork and develop a strong case was extremely stressful and I was very grateful for the support our adviser was able to offer.

Unfortunately proving habitual residence was not the end of our problems: my husband is not entitled to claim Personal Independence Payments as to qualify for this you need to have been living in the UK for at least 104 weeks out of the last 3 years, and we obviously could not meet this criteria. We have not paid sufficient National Insurance into the British system to receive contribution based benefits, but have been able to claim child benefit and child tax credits. If I am able to find a job an work for at least 24 hours per week I will be able to claim Working tax credits too, but I am worried that this will be too much to take on while my husband is unwell an I am caring for the children too.

Our situation is not great, and we are going to need further advice as our circumstances change over the coming months, but we are so thankful that we had such professional help to guide us through the complicated process of proving habitual residence – without this we would still have no income at all.”

John’s Story

“My wife and I first met Steve, our Macmillan Welfare Benefits Adviser, back in January. My wife had been diagnosed with breast cancer but these days so many people get over cancer I was not really worried about our situation, and was not sure how advice about benefits would help us. I thought we would be back to normal in no time: with both of us working we’d always been able to manage. However, at the time my wife was getting Statutory Sick Pay, which was making things very tight, so I thought it was worth asking Steve about any other help available.

Steve told us about several other benefits we could claim: we were soon receiving working and child tax credits, and housing benefit. We were surprised to discover that we would actually have been entitled to some of these benefits before my wife became ill, but we had never known about them! Steve also helped us to apply for Personal Independence Payments for my wife and we were pleased when she was quickly awarded the highest rates.

Just as I thought things were beginning to look up I was taken ill. It turned out I had a stroke, and I sent a text to Steve from hospital, as I knew our situation would get worse again if I was not able to work. Steve was able to help me get Statutory Sick Pay sorted out, get our other benefits adjusted, and he is getting ready to help us both apply for Employment and Support Allowance if neither of us is able to go back to work.

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My wife has now had to undergo a mastectomy and sadly her illness is terminal, although the doctors are hoping to prolong her life as long as possible. Steve has been able to signpost us to another organisation who are helping us to find more suitable accommodation close to our young son’s school, and this will help us a great deal.

As a family we are not in the situation I hoped for or imagined at the start of the year, but thankfully the advice we have had from Steve has helped us to cope with what could have been a devastating year financially as well as personally.”

.Reflections on the year from Advisers Steve and Michele

One question we are often asked when we talk to groups of patients and carers about the project is how we can empathise fully with cancer patients and their families and understand what they are going through. This year, by coincidence, both our advisers, Michele and Steve, have had personal experiences which have brought them closer to the impact cancer can have. They share their stories here.

Michele

“In my work as a Macmillan Welfare Benefits adviser over the last three years I have many times counted my blessings when I have seen the impact cancer has had on individuals and families. When I discovered an unusual mark on my breast in November last year I recalled many conversations I had had with breast cancer patients, and knew immediately that I should get it checked.

A few weeks later the diagnosis of cancer was confirmed. I underwent a lumpectomy and in January received the good news that my lymph nodes were clear. There followed five weeks of radiotherapy, and I returned to work in April.

The experience brought home to me the important role of employers in assisting the recovery of workers facing a serious health problem – BHT were very supportive and I was fortunate to have generous contractual arrangements. It has also allowed me to experience first hand the debilitating impact of anxiety and fatigue which accompanied the various stages of diagnosis and treatment, which I often see clients struggling with.”

Steve

“I was indirectly affected by cancer this year when my partner Sharon received shocking news as a result of recent advances in genetic screening and genealogy. Sharon’s eldest sister died from ovarian cancer, her mother had breast cancer, and it was this family history that triggered the offer of genetic testing to check for a faulty gene. After much discussion and

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agonising as a family, Sharon made the decision to be tested to see if she carried the faulty gene. The test revealed that Sharon had inherited an extremely high genetic propensity to breast cancer. The statistic that hit home was that women with an abnormal (or faulty) BRCA1 or BRCA2 gene have up to an 80% risk of developing breast cancer by age 90. Armed with this knowledge and with the offer of an oophorectomy and a mastectomy followed by reconstructive surgery, Sharon considered it a “no brainer” and decided to opt for preventative surgery from the NHS.

Sharon had a double mastectomy in May: she is recovering well but still not able to return to work yet. The experience has made me realise how important it is to be able to support your loved ones through the decision making process ones the facts are known, then through surgery and recovery: even though Sharon’s surgery was preventive the whole experience was still gruelling and exhausting for her.”

Working with other professionals

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Training and Awareness RaisingSince the last annual report Universal Credit has been introduced in East Sussex, starting with the Hastings and Rother area and then moving West to Eastbourne. With constant changes and adaptations being made this has meant that up to date training for the advisers and project managers has been more important than ever. Fortunately the advisers have been able to take advantage of local training about Universal Credit funded by the local Advice Service Transition Fund as part of the development of the Eastbourne Advice Network. Although the number of individuals actually claiming the new benefit is tiny at the moment the advisers have already been to visit the CNS teams in Eastbourne and Hastings to update them on the changes. They have also been to visit the teams operating out of Princes Park medical centre and Hailsham.

Michele Javary gave a presentation to the Breast Care Support Group recently about the work we do and how to access the service: in view of her personal experience of this illness recently the project managers were impressed by Michele’s positive approach in tackling this presentation.

Project managers Sue Hennell and Sue Pattenden have also been able to benefit from training about the commissioning process, bid writing and measuring social value which have enhanced their understanding and will help them to build resilient and successful organisations for the future.The team have also been involved in promoting the service at the ‘HELP!’ exhibition in February of this year, an event which focussed on voluntary sector services in Eastbourne and East Sussex.

In March 2015 Sue Pattenden attended the South East Chartered Institute of Housing conference in Brighton as an exhibitor and was able to talk to a wide range of social housing providers with stock in East Sussex about the service.In July Sue Hennell took part in an event at the View Hotel, Eastbourne which looked at the impact of social welfare law on health inequalities which again provided an excellent opportunity to network with other service providers and raise awareness of the project. Local Commissioners from Brighton and Hove and East Sussex attended this event, and Macmillan Cancer Support gave a presentation on the impact of welfare benefits advice, using the East Sussex Welfare Benefits Service as an example.

The Eastbourne Advice Network has grown and developed this year, with both Brighton Housing Trust and Money Advice Plus being very active members: this network is enabling organisations locally to gain a much clearer understanding of each others’ work and has provided another forum for raising the profile of our service through presentations and networking.

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Future Plans

We are now into the fourth year of running our service and the environment we are operating in has altered significantly since we launched the project in June 2012. Funding for voluntary sector services has shrunk with the abolition of legal aid for welfare benefits advice, further cuts to local authority spending, a more rigorous and commercial approach to bidding for funding, competition from large private sector players, and commissioners pulling back from funding advice.

At the same time people have faced a squeeze on their income with budget changes and welfare reform. The crisis in housing has led to more clients renting in the private sector with no security of tenure: employment terms and conditions have become less generous, with more part time and zero hours/variable hours contracts, adding to financial insecurity, particularly when people are affected by ill health

When we started project delivery the intention was that Macmillan would ‘pump prime’ the service for three years, before handing it over to the health sector, but this pattern of funding has all but disappeared.

At the time of writing this annual report we are in the process of applying for a further year’s extension of funding from Macmillan, having already been granted a year’s extension from 2015-2016. If successful this further extension will give Macmillan time to reflect on existing service models and redesign their benefits advice services across the whole region in the light of social change.

We are very keen to work with Macmillan to explore ways of redesigning a service for the South East, and would like to have the opportunity to share with Macmillan the thoughts we have about what is needed, what works, and how service models could be scaled up to serve a larger geographical area. The completion of the Horizon Centre in Brighton will create a new focal point for services in the area, and as part of our application for extension funding we are committed to delivering our service from the new centre one day a week, and it will be interesting to watch the development of the new information centre.

We are also aware of the importance Macmillan places on offering services in acute setting where possible. Our own experience of this has been difficult, owing in part to the lack of suitable confidential space in the local hospital settings, but we are keen to learn how this face to face offer has worked for other services. Most of our success has been with telephone advice and home visits and we have ideas about how these could be combined with face to face advice in acute settings and information centres, and co-ordinated over a large area by one administrator. If services across a wide area used a

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common system such as Advice Pro to manage and record cases details then useful data for a number of Macmillan’s areas of interest could be collected easily, and project outcomes could be consistently recorded. Such a system, being web based, would also facilitate home working for face to face advisers while an overarching telephone advice service could support those who do not need a home visit.

Another idea are we are interested in developing if our application for an extension is successful is training of volunteers to complete ESA and PIP forms with clients once the appropriate benefit has been identified by the specialist advisers.

We have also discussed with the steering group the idea of widening the service offered to include other life limiting conditions such as stroke, heart disease, motor neurone disease and diabetes to name but a few: this would involve redesigning the service as a joint or multi funded project, but might enable us to attract additional funding.

We are looking forward to discussing these ideas with Macmillan over the next few months.

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