Hampshire Macmillan Citizens Advice Service 7th Annual Report October 2015 to September 2016

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Foreword from the Service Manager…….

This has been an amazing year! Our best ever in terms of financial gains secured for clients nearly ... £7.5m

We also had a 20% increase on the previous year in the number of clients helped, demonstrating the growing need for assistance with finance and the complexities of the benefits system when facing cancer. Results from our survey of professional medical staff evidenced that our Service is a vital link between nurses and patients with an average of ...

2.5 hours per patient saved in time by professional staff.

Macmillan has secured our funding until the end of December 2018, enabling our Service to continue to grow and help those in need across Hampshire. This is fantastic news and we would like to thank Macmillan for their ongoing commitment to this Service.

We have also been able to continue delivering our services in 2016 through the funding received from our partners:

 Countess Mountbatten Hospice Charity  The Ark Cancer Centre Charity for Hampshire Hospitals Foundation Trust  Oakhaven Hospice Trust  Hospitals NHS Trust  Rowans Hospice  Hospital Charity

…thank you to all our funders.

Sue Alford, Service Manager Hampshire Macmillan Citizens Advice Service. For every £1 that is invested in the Service, approximately £25 is generated for Hampshire clients….

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Hampshire Macmillan Citizens Advice Service (HMCAS)

7th Annual Report

Hampshire Macmillan Citizens Advice Service (HMCAS) delivers a consistent, targeted and holistic advice service for people affected by cancer who are resident in or being treated in Hampshire, including Southampton, Portsmouth and the Isle of Wight. We are a team of caseworkers and support workers providing specialist advice and casework face-to-face, through a telephone helpline and via email/letters. Using a single telephone number as a point of access, it is unique in meeting the geographic and diverse population challenges of the county within a single service. The largest proportion of clients first contact us through our telephone helpline but a large number also see us for the first time at hospitals, hospices or other outreaches.

Our caseworkers are based in Local Citizens Advice locations across the area, harnessing their expertise and community networks in delivering high quality casework and advice services.

Back row: Fran McGrail (Portsmouth), Sally Collier (Southampton), Eva Richmond (Southampton), Sue Alford (Service Manager), David Eppel (Yateley), Miriam Horstman (Isle of Wight), Rachel Campbell (), Denise Cox (), Tony Siddall (Yateley),

Front Row: Mohammed Islam (), Marilyn Seabrooke (New Forest), Jude Randall (), and not pictured Sharon Shear (Portsmouth and casework supervisor).

Our team work very closely with professional staff at our outreaches in the many hospitals and hospices throughout Hampshire.

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We have outreaches in the following locations:

Southampton General Hospital – Monday/Wednesday/Thursday Queen Alexandra Hospital, Portsmouth – Monday/Wednesday Gosport War Memorial hospital – Thursday morning by appointment Royal Hampshire County Hospital, Winchester – Wednesday afternoon and North Hampshire Hospital – Wednesday/Thursday St Mary’s Hospital, Isle of Wight – by appointment Oakhaven Hospice, – Twice monthly, Tuesday and Thursday The Rowans Hospice, Purbrook – Thursdays, weeks 2 and 4 Countess Mountbatten Hospice (varying) - Tuesdays/Wednesdays Waterside Centre, Hythe – Third Monday of month

During summer 2016 the Hampshire Macmillan Citizens Advice Service carried out a survey of health professionals to look at how the Service helps them in their roles and the clients who have a cancer diagnosis. We received 53 responses which came from a variety of locations. What follows is an outline of the results received along with some anecdotal comments.

“Having someone with excellent knowledge allows me to refer on with confidence rather than using up my time to find out information.”

“Saves me time and I don’t have the knowledge” “Excellent service we can’t do without”

In total, 23 respondents gave an actual figure for time saved - a total of 55.5 hours per week. This is an average of 2.5 hours per week for each professional. Fifteen respondents were unable to give an exact amount as it varied from week to week and depended on the needs of the individual client.

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“Relieves the time spent trying to sort out these problems. A wonderful service, we couldn’t manage without it as we do not have the time to sort these types of problems out for the patients. The patients really appreciate having someone who really knows how to access help for them, who is separate to the chemo unit.”

“An invaluable service completing/ complimenting/ augmenting patient treatment experience.”

92% of respondents felt that the well-being of their clients was either improved or much improved due to the service

“I am dependent on the support of this “I would not have time to focus Service as the majority of my patients will on the maintaining and need financial advice and access to benefits development of our services and and grants as their condition develops and as all that involves as our users a trained Nurse this is not my area of would have heightened anxieties specialty and would be time consuming for and concerns which exacerbates me to learn. The patients I support greatly their wellbeing and also the time appreciate this service and it is invaluable in their time of need.” Clinical Nurse Specialist I would need to spend supporting Clinical Nurse Specialists completing grant 88% forms.” Macmillan Information of respondents said it & Support Centre Manager was easy to refer clients to the Service. No one found it difficult to refer. “Open door policy… Phone/just send “Ease worries of our patients” patients up”

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Service Achievements and Outcomes How we make a difference…

Within its seventh year of operation the service has reached almost 2,500 clients affected by cancer, generating over 14,000 contacts, resulting in financial gains of £7,497,255. We had over 3,000 appointments on a face-to-face basis in various locations in the county, including home visits, outreach, and at local Citizens Advice offices which indicates the need for more than one appointment to resolve some issues our clients are faced with.

Outcome categories

Year 7 Year 6 Year 5

Number Amount Number Amount Number Amount

Benefit gains 1,843 £6,446,973 1,369 £4,602,404 1,156 £3,643,785

Charitable gains 524 £238,837 428 £154,730 364 £98,217

Insurance 11 £378,710 22 £397,182 24 £329,197

Debt written off 37 £166,436 43 £99,924 21 £55,656

Other financial outcomes 41 £150,244 37 £532,614 81 £142,908

Blue badges 326 £116,065 182 £63,008 115 £41,975

Other non-financial outcomes 162 114 70

Total 2,944 £7,497,255 2,195 £5,849,862 1,831 £4,311,738

An outcome is where the work we have been able to do with a client and their family has brought about a change in circumstances which could be an improvement in finances or in well-being or both.

Benefits and outcomes

When we meet our clients we find that the majority have financial concerns. We start each meeting by offering a welfare benefits check to establish if there are benefits available for them to claim. Our benefit outcomes have substantially increased - up 40% on last year. During this particularly busy year we have assisted 663 clients to claim disability benefits and have seen this increase their income by £3,442,509. We have seen many more partners and family members claiming Carers Allowance and this has increased two-fold with us identifying 102 claims for this benefit.

If we are able to increase household income by utilising the benefit system, we are helping to increase the well-being of our clients by easing their stress.

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Benefits and outcomes (cont’d)

The following client story illustrates how much difference we can make (pseudonyms used):

David and Julie – benefits advice helped them to retain independence

David is in his 70’s and has cancer and drops in to the Macmillan Information Centre at Southampton General Hospital while he is waiting for his appointments for treatment. One day while he was there he came in to see the HMCAS caseworker as he was concerned about benefits for his wife, Julie. Julie had applied several times for Attendance Allowance (AA) and each time had been refused the benefit. She had even gone as far as appeal and still not had a positive outcome.

The caseworker discussed Julie’s health and care needs with David and assessed that she did seem to meet the criteria for AA. The caseworker also discussed David’s health and care needs and he also met the criteria to apply for AA. Appointments were booked to help both David and Julie apply for the benefit. Both claims were successful and both got the higher rate of £82.30 per week. They were notified at Christmas time and were thrilled that their household income had now increased by £164.60 per week.

The caseworker identified that the successful AA claims made them eligible for Guaranteed Pension Credit (GPC) through the Carer Premium so another appointment was made to help David and Julie apply for Carer’s Allowance and GPC. And once the GPC was in payment they became eligible for full Council Tax Reduction so another appointment was made for this benefit application.

Through all these successful benefit awards David and Julie’s household income has increased by over £11,300 per year.

David and Julie try to stay independent and keep active socially and keeping their car on the road is essential to them. The increased income will ensure that they can continue to afford the car and maintain a good quality of life and remain independent and have an active social life.

This case is one of many where we have been able to improve the quality of life for our clients by maximizing their income and enabling them to retain their independence and quality of life.

Debt work and outcomes

This year we have worked with 23 clients with debts. We have assisted one family with a bankruptcy petition and this saw them have over £92,000 worth of debt written off which has given them peace of mind whilst they cope with a cancer diagnosis and the resulting reduction in income.

Debt work can be complex and time consuming and part of our role is to give our clients the best possible service and sometimes this can be referring to another ‘not for profit’ Service or Citizens Advice office.

Debt Year 7 - 2015/16 Year 6 - 2014/15 Year 5 - 2013/14 written off £166,436 £99,924 £55,656

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Grants

Grants are an important part of the work we undertake with clients. We are continually looking to source income for our clients to assist them with basic needs such as heating and clothing. It is difficult to imagine how we would cope without charitable trusts. This year we have been working with a number of local charities including Football For Cancer and the Isle of Wight and Hampshire Fund. It is a serious concern to HMCAS that one of the most supportive charities, Elizabeth Hall Trust, will run out of funds this year but we would like to say a big thank you to them for all the help they have given our clients over the past seven years.

How Elizabeth Hall Trust has helped in difficult circumstances

Our clients (joint) had a number of debts, including mortgage and council tax arrears. (We were not assisting with debts as they were using the help of the Step Change charity). The clients wanted help replacing their boiler as their home had been without heating for a number of winters. Portsmouth City Council were able to help by supplying and fitting the boiler but would not cover the costs of the VAT. So we applied for a grant to cover this cost.

Whilst we were assisting with grant applications, our client’s partner passed away suddenly and we increased our grant to include assistance for the funeral, because state help on offer doesn’t cover the cost of even a basic funeral.

Once this work had been completed we received a phone call from the clients’ social worker who informed us that the client had died in hospital. The family were left with funeral costs and due to family circumstances there was no statutory assistance available.

We went back to the Elizabeth Hall Trust who asked for us to send in the bill and it would be paid direct to the funeral directors. This really eased the pressure on the family and shows that without the assistance of charities we would not always be able to assist clients at these very difficult times.

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Giving Advice

On what issues did our clients ask for advice?

The advice issues covered by our Service are illustrated here. We have noticed that most enquiries are concerned with income maximisation. Our clients seek assistance with benefits, grants and travel and transport (including Blue Badges).

Over 70% of our clients have requested advice about benefits. We have seen an increase because the system has become more difficult to understand and there is less local assistance available. Clients are now reliant on central telephone help centres that are only able to answer simple queries whereas anything complex has to be referred for a call back. Our clients’ health conditions often make this very difficult for them to deal with. We support all clients as appropriate from the initial claim to, on occasion, the appeal level.

Where do we see our clients?

As a service we try to give advice via the telephone. We also see clients face to face when requested and this is a large area of our work. We will always request that clients come to us but 22% of appointments still take place in the family home. This service is offered to housebound clients who are too poorly to travel. It is a great resource to be able to offer and acknowledges the accessibility issues many of our clients have.

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How do our clients first contact the Service?

Our telephone service is still the first point of contact for the majority of our clients. Our leaflets are available in most hospitals and hospices in Hampshire and we also display posters in GP surgeries and in all of our outreach locations to encourage clients to contact us for assistance.

This year, we have also started offering email advice through our new central email address: [email protected]

We will be able to answer queries, take referrals, book appointments for an interview or refer clients to their local caseworker through this new service. We are hopeful that this will increase our accessibility and allow those who work or have speech difficulties to obtain the information they need. Our email address is included on our leaflets.

Disability

Whilst the majority of our clients have a long term health condition or a disability, our service is available to all those affected by cancer. This includes their carers and family members as the effects of living with cancer impacts the whole household.

Client Profiles Who were our clients in Year 7?

The majority of our clients are of working age and/or nearing retirement age. We also saw an increase in the number of older people – over 85 years old contacting the service.

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Where do our clients live?

Cancer Information

Nearly half our clients had a terminal diagnosis before getting into contact with HMCAS. Over time we have become aware that many cancer patients are considered terminal when they are first seen at the hospital; they receive their prognosis at the same time as their diagnosis. This is a life changing moment when people will look for assistance with income maximisation. They will also want to discuss difficult issues and will approach services for the first time.

Making a difference

The client was in his 60’s and had been diagnosed with terminal cancer. He had no fixed abode and often slept in his van. He ended up staying with a good friend who had her own health issues. It was impossible for the client to remain on her sofa as the property only has an upstairs bathroom so he was having to wash at the kitchen sink. Due to the circumstances the client was seen the same day. All relevant benefits were claimed. The client was referred to the Local Authority Housing Department as homeless.

Within two days the client was housed in temporary accommodation. The delay was due to the client having difficulty getting to the Local Authority offices – another friend loaned him a wheelchair. The client was reluctant for our caseworker and others to visit at his friend’s home due to her needs. The client was very pleased with all the help he received from the caseworker and others.

The client sadly died about 4 weeks after referral to HMCAS. He had been offered permanent accommodation which he had visited and was very pleased with and he was making plans with his son about furniture and the new flat.

This illustrates how we can become involved with clients very near the end of the life and all the work we do, although appreciated, is sometimes too late.

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Telephone Helpline

We operate our advice line Monday to Friday from 9.00 a.m. to 1.00 p.m. with a message service outside of these hours, enabling one of our advisers to call back. Our telephone line is how many of our clients’ first contact our Service but sometimes the client will want to book an appointment. Although we offer drop-in appointments at all our outreach locations many clients prefer to pre-book so they know what time they will be seen. The telephone service also acts as a point of contact for clients and third parties to speak to caseworkers. Whoever answers the telephone will endeavour to answer the query and progress the client through to the next step.

Since the move to an 03 number, our accessibility has increased. 03 numbers are included in many call plans with inclusive minutes and this has resulted in a 15% increase in call volume over the last year. Mobiles account for just over 30% of our calls, whilst Portsmouth (023 92 code) accounts for almost 12% and Southampton (023 80 code) is almost 10%. These are where our highest level of users call from. We are still receiving a small number of calls outside of the geographical area of Hampshire (3%).

Research and Campaigns

Research and Campaign work is a twin aim of Citizens Advice where we use the experiences of our clients to try to lobby for change and improvement to existing systems and practices. We can act on a local level or in partnership with Citizens Advice and Macmillan on a national level.

We have worked particularly hard in the area of Research and Campaigns and have been pro-active in contacting our partners both nationally, in the Department for Work and Pensions (DWP), and locally, by approaching and meeting with local authority departments.

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Travel and Transport

We were contacted by Citizens Advice and have assisted them in the re-writing of the travel and transport pages on their internal advice web pages and the public website.

Blue Badges

We have worked with Hampshire County Council and Portsmouth City Council to simplify the process to obtain a Blue Badge for those with a life-limiting illness. Both authorities made positive changes to their forms following the approach and have simplified the application for those with a DS1500 (a medical certificate supplied by a medical professional when a patient has a terminal diagnosis). These clients are able to access benefits using ‘Special Rules’ as they have a terminal illness with less than six months to live.

Changes to the Hampshire Blue Badge applications A problem arose in mid-2016 concerning the issuing of Blue Badges (BB) to terminally ill patients.

An email from the BB unit of Hampshire County Council (HCC) arrived at Citizens Advice Winchester raising a concern that Hampshire Macmillan Citizens Advice caseworkers were stamping BB applications with a Macmillan stamp, which allowed HCC to issue a BB without any further information being necessary. HCC were worried that BB would be misused and were being issued without medical evidence of mobility needs.

I contacted HCC to clarify a few issues. I explained HMCAS does not have a Macmillan stamp; secondly we would always send a DS1500 (evidence of terminal illness) with a BB application if applicable.

It turned out that historically (before the inception of HMCAS) HCC had advised Macmillan professionals in the area that if they put a stamp on the BB application this would be acceptable proof that a person qualified as needing help with mobility. At that time there was no insistence that a DS1500 had to accompany the BB application form and therefore some applications were made on behalf of people who were not necessarily classed as terminally ill under Special Rules.

After further discussion about the interpretation of what Special Rules meant, people outliving expectations, the needs of terminally ill people and challenging wrong assumptions by HCC of the ability of terminally ill people to go out, HCC decided to change the BB application form. A copy of this was put on the HCC web site. Unfortunately, this new form had removed the tick box for terminally ill people, meaning that it was more complex for them and had to be fully completed with full evidence (re: identity and residency), which wasn’t the case for Special Rules previously.

This prompted yet another phone call to HCC to discuss how difficult this would now make applications from those who were in genuine need and how it would make the process longer for everyone. Again after a very long discussion HCC agreed they would “tweak” the new application form online, restoring the simpler tick box for Special Rules, but that the paper claim forms would take a bit longer as they had just gone to the printers in the revised format.

The new format now makes it a mandatory requirement that a DS1500 is sent with the claim. Claims will no longer be accepted under terminal illness rules with just a Macmillan stamp on them. It has been agreed with HCC that they will monitor this situation but the current outcome is a good one for our clients. It demonstrates how working with local authorities can have a positive outcome for everyone and illustrates the benefit of taking the time to research and campaign.

Denise Cox (Winchester Caseworker - HMCAS)

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Policy change for Department for Work and Pensions (DWP)

I was very concerned about the unfairness of the claiming process for terminally ill claimants under state pension age with an existing award of Disability Living Allowance (DLA) when their condition deteriorates and a Special Rules claim is necessary.

Their change in circumstances triggers a re-assessment for the replacement benefit of Personal Independence Payment (PIP). Having trawled through the Decision Makers’ guide for Personal Independence Payments (PIP), I could find nothing that provided Decision Makers’ guidance for assessment of special rules claims for existing DLA claimants. Consequently, such a claim could take up to eight weeks for the award to be finalised. The DWP was not treating such claims in the same “fast track” way as new PIP claims which could be processed and in payment within two weeks. Increased benefit payments were being unfairly delayed. Unfortunately some claimants could die before a decision had been made causing emotional trauma for families having to deal with back payments to an estate. I complained to the DWP asking them to look into this lack of guidance for Decision Makers as it was grossly unfair to those with a terminal condition. A review with implementation of updated guidance was urgently needed.

I then contacted local MPs and the Parliamentary Under-Secretary of State for Disabled People at that time, Justin Tomlinson, to express my deep concern regarding the time that terminally ill cancer patients had to wait for any increased payments entitlement when they move from DLA to PIP.

I also contacted the Macmillan campaigns team to highlight this issue in the Hampshire area. Macmillan, alongside other organisations, works behind the scenes to ensure that the Government is aware of such problems, calling on them to amend the regulations

The DWP finally changed the regulations and from April 2016 special rules clients already claiming DLA no longer have to wait for the 28 day follow on period before being paid at the higher benefit rate.

The result of all the campaigning was a huge success for our Hampshire clients and many others nationwide.

Jude Randall (Gosport Caseworker—HMCAS)

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What our clients tell us

Feedback from our clients is regularly obtained and analysed, giving robust evidence of the value of the service for those using it.

2016 client survey feedback

95% of clients responding had more confidence to be able to deal with their financial, housing or work situation following our help.

92% of clients responding were less worried about money, housing or work issues. “I was so worried and concerned about my family’s financial/ housing situation and I didn’t think I’d find any service that would help me. I am so grateful for this service, they've made me feel so welcomed and that I’m not alone.” Client – Southampton General Hospital

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2016 client survey feedback

70% of clients responding would not have claimed benefits without our “The help and advice we received has greatly improved our lives, help. financially and physically. We appreciate the help you have given us.” Client – Queen Alexandra Hospital

100% of clients responding would recommend our service to others.

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What our clients tell us ...

“I can't thank your caseworker enough. My sister was horrified when she learned she was no longer able to work due to due to her “I very much appreciate the illness. She had never claimed any benefits help I received. When you are not before this, and neither of us had any idea well, it is extremely hard to how to go about it. We spoke to the navigate your way around the caseworker and her help and understanding, system, and I would have given up we will never forget. We had no problems at at the first hurdle. I also am thankful that I have a resource I all as she took care of everything.” can call on if I need future help. So Client – Basingstoke Hospital Thank You.” Client – Countess Mountbatten House “If it wasn't for your caseworker, I wouldn't be where I am today. Many thanks for the advice and help to gain financial help. Many thanks. “ Client – Southampton Hospital

“I am very grateful to MACMILLAN “Excellent service and advice given. CAB. They were most helpful. I Wouldn't have been able to complete would have been in financial the PIP claims form on my own at that trouble if it hadn’t been for them. moment in time. It’s given me the THANK YOU SO MUCH.“ confidence that I'd lost post operation Client – Queen Alexandra and acceptance of the realities of Hospital cancer. Thank you.” Client – Queen Alexandra Hospital

“Although I would have claimed benefits without your help, you were able to ease me through the minefield quickly and confidently which took so much pressure & stress away from myself at a difficult time. This service has been a Godsend! Thank you.“ Client – St Mary’s Hospital, Isle Of Wight

“The service removed the inevitable stress and time in researching and “I felt very calm and relaxed and applying for the various benefits.” less worried and stressed. The caseworker was a godsend and I thank you very much. X” “The adviser I have had for the last few years has been a life saver. Feeling unwell most of the time but then having the financial side taken away gave me a real lift and can never show how grateful I am for all the help she has given me.” Client referred by G.P.

“I was treated with the utmost respect. Wonderful Service. Fantastic people.”

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How our HMCAS caseworkers have a positive impact on people’s lives

Securing grant funding to help a Easing the stress of a cancer diagnosis for an client go home Isle of Wight client

The client had recently been diagnosed with Our client was an inpatient at the Hospice who was desperate to be bone marrow cancer although the symptoms discharged so that she could go and live had started nearly a year ago. His symptoms - with her sister. She was unable to leave severe chest pain, fatigue, breathlessness and the Hospice until a stair lift had been anxiety about the possible outcome - meant he installed but the cost was proving had been unable to work for a year. The client prohibitive. was very upset about the length of time it had

taken for the diagnosis despite numerous visits Although she had some savings she was to his GP who told him that there was nothing concerned that there would not be enough money left over to pay for her wrong. funeral so had been resisting dipping The client lives with his wife in a rundown into them to pay for the stair lift. rented property. His wife works as a cleaner With our assistance we helped her apply who tried to take on more hours as her for a Macmillan grant of £500 towards husband was unable to work. Unfortunately, the cost and this, together with the due to the progression of his illness, the client’s backdated benefits we were able to need for care was also increasing. obtain for her, the client felt comfortable enough to give the go ahead for the To try and pay rent and to make ends meet the installation. client had been selling their antique furniture. However, they got to the stage She is now happily back at her sister’s where he had nothing left to sell and there home. wasn’t much furniture in the house.

We visited the client at his home to assess the situation and identify what steps we could take. Firstly, as the client was unable to speak and was very anxious, we applied for Pension Credit on his behalf. We also made a Personal Independence Payment application on his behalf. Due to his anxiety around writing responses to questions on the application form, we reassured him that we would complete the form for him; all he had to do was provide the answers.

The client called to say he was now in receipt of Pension Credit and he was awaiting the outcome of the application for the Personal Independence Payment. As the Pension Credit award letter had been received, we agreed to another home visit to complete claim forms for housing benefit and council tax relief.

The client was overwhelmed by the sudden increase in income and his wife has been able to reduce her working hours and concentrate more on her caring role. They are amazed they will get further help with rent and council tax on top of what they have already been awarded. They are extremely grateful and spoke very highly of the HMCAS service which helped them during a very anxious and upsetting time.

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Hampshire Macmillan Citizens Advice Service operates across Hampshire, Southampton and Portsmouth cities and the Isle of Wight. Our service can be accessed by calling ...

0344 847 7727

9 a.m. to 1 p.m. - Monday to Friday

@ [email protected]

For further information about the Service, please contact the Service Manager:

Sue Alford – [email protected]

Citizens Advice Hampshire and Independent Citizens Advice Bureaux working together for Hampshire - http://citahants.org

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Registered in . Registered Office: c/o 83 Britannia Gardens,

Hedge End, Southampton SO30 2RN

Registered Charity no 1122695

http://citahants.org

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