Sickle Cell & Thalassaemia Support Project

Like many other organisations we have also been affected by the generaleconomic climate, however much still needs to be achieved in order to deliverthe best outcomes for our users. The national changes in health and social carehave been a minefield and it has been a challenge in its self to understand howservices will be commissioned and from whom in the near and future years.

We remain confident and privileged to be continuing to serve this community,growth, development and bespoke services are to remain central in our desireto ensure we fully meet both the social and health needs of the client group.

However, despite the last year being a challenge, we face the future confidentthat the Sickle Cell and Thalassaemia Support Project will continue to add greatvalue to the voluntary sector and the communities we serve.

Co-ordinators Report

Sutinder Herian Project Co-ordinator

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After reaching last years milestone of 21years of operation the organisation hascontinued to deliver services to our serviceusers as well as increasing awarenessamongst professionals and the public. Weare now well established in three areaswithin the West Midlands – Wolverhampton,Walsall and Dudley ensuring that throughthe delivery of the screening programmethat good outcomes exist for parents, babiesand those living with the conditions.

As NHS restructuring continues, along withthe welfare reforms we recognise theimportant role we play in supporting ourservice users through these changes. Theintroduction of our outreach services wehope will be a timely intervention so as tomeet these challenges.

I would like to take this opportunity to say amassive thank you for all the dedicated

individuals who have volunteered their timeand energy to the cause. This, coupled withequally committed staff, for me remains thesecret of our success over the years.

The organisation is overseen by a board ofvolunteers who act in the best interest of theorganisation and service users and I wish toacknowledge their considerable contributionand insight to the work of the organisation.

I’m proud of our efforts over the years andmy wish for the coming year is that strongerlinks are formed between our commissionersas well as volunteers involved in theoutreach project allowing us to meet theneeds of our service users.

Thanks again to everyone for all you havedone during the past year.

Foreword

Clarence CrosdaleChairman

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Thalassaemia MajorThalassaemia Major (BetaThalassaemia) is the most severe formof thalassaemia. It results in theinability of the body to producehaemoglobin, thereby causing lifethreatening anaemia. BetaThalassaemia is thought to affect morethan 700 people, with approximately214,000 carriers in the UK.

Thalassaemia is based on problems inthe production of either the alpha orbeta chains that make uphaemoglobin. This causes inefficientproduction of normal haemoglobinand the increased breakdown of redblood cells causing anaemia.

There are many forms of Thalassaemia,among which Beta-ThalassaemiaMajor is the most common.

Children who are born with Beta Thalassaemia Major cannot makeenough haemoglobin in their blood.

As a result they become severelyanaemic and need blood transfusionsevery 4/6 weeks, this causes ironoverload in the body. To deal withthis, some need regular injections forlife, but new treatment is nowavailable which is taken by mouth, butthe transfusion need is unchanged.

Both conditions can restrict a child’s oradult’s ability to conduct normal dailyactivities, and can also have profoundpsychological effects on the individualsand their families.

Who can it affect?Sickle Cell and Thalassaemia aremore prevalent in people whohave originated from Africa, theCaribbean, the Middle East, Asiaand the Mediterranean.However, because of theincreasingly diverse society inEngland, people who carry thegene for Sickle Cell, Thalassaemiaand other haemoglobin variantscan be found in any ethnic group.

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About Sickle Cell & ThalassaemiaSickle Cell Disease and ThalassaemiaMajor are in a group of blooddisorders calledhaemoglobinopathies and areamongst the most commoninherited disorders in humans.

Sickle Cell DiseaseSickle Cell Disease is a potentiallyserious blood condition that affects theway oxygen is carried around the body.In England, Sickle Cell is as common ascystic fibrosis – affecting an estimated12,000 people in the UK. Worldwideapproximately 14 –16 million peopleare said to be suffering from the SickleCell Disease.

Sickle Cell is the most common seriousgenetic disorder in England and as suchit must be viewed as a mainstreamissue for the National Health Service(NHS). It is estimated that about 360

babies are born each year in Englandwith Sickle Cell Disease and a further9,600 babies are found to be carriers ofthe disease. The growing number ofchildren – many of whom come fromdisadvantaged communities in urbancentres, require services at a specialistlevel which match those available forother conditions (such as cancer andcystic fibrosis) to foster health equalitiesand to provide a better quality of lifefor both the child and their family.

Sickle Cell Disease (SCD) shortens thenormal life span of red blood cells.While the normal red blood cell isshaped like a smooth and flexible disc,the Sickle red blood cell may becomedistorted into a sickle shape afteroxygen is released from itshaemoglobin, so have a shorterworking life.

The sickle shaped red blood cell is hardand sticky and can form blockages insmall blood vessels. These blockageslead to repeated acute and chronictissue damage and can cause episodesof severe pain. The shorter lifespan ofSickle Cell also leads to chronicanaemia.

Episodic pain events known as crises,infection and lung complications arethe more common problems caused bySickle Cell Disease. Othercomplications may include stroke,kidney and heart damage, damage tojoints, and other debilitatingconditions.

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Services

The organisation expanded its services to cover the three Black Country areas, Wolverhampton, Walsall andDudley - each area has commissioned specific services under their respective contract. The table below givesan overview of the range of services available to service users.

Visits

Education

Counselling

Volunteering programme

Campaigning

Advice & Advocacy

Screening

Health Promotion

Outreach

Fundraising

Community Development

Events & Exhibition

SCTSP

Service Provisions

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What is the difference betweena carrier (trait) and the disease?

• Carriers are usually healthy.• Being a carrier is not an illness and will not

develop into the disease.• Carriers usually do not know they are carriers

until they have a specific blood test.• Carriers can pass the condition onto their

children, who can be affected by the disease• At the time of planning a family, carriers are

advised to have their partners tested to identifyif there is a possible risk to their child.

CarrierHow do you get the Disease?

If both parents have Sickle Cell or Thalassaemia trait,there is a one in four chance (25%) for eachpregnancy that the child will have Sickle CellDisease or Thalassaemia Major.

• The haemoglobin within the red blood cells isaffected.

• Individuals inherit the condition from theirparents, it is present from birth

• The conditions are life-long. Bone marrowtransplant is the only known cure and this is rare.

• The condition is an illness and usually requiresmedical attention.

Disease

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ScreeningThe NHS Plan (Department of Health 2000) promptednew initiatives to be put into place to modernise antenataland newborn screening services. This was to ensure thatexpectant parents can make informed choices aboutwhich tests to have.

Screening in early pregnancy is an essential component ofgood quality maternity care and a fundamentalentitlement for the mother and her unborn baby. Thiscommitment covers three different screening programs: • Antenatal screening for Thalassaemia • Antenatal screening for Sickle Cell • Neonatal screening for Sickle Cell

During the period of April 2012 to March 2013, wereceived and processed 401 unusual blood results (theseare individuals that have been tested and identified ashaving an unusual result).

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Organisational Structure

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Wolverhampton Walsall

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Antenatal Screening The Project runs joint clinics with the Antenatal Team at both New Cross and Manor Hospital. All parents found to havean unusual haemoglobin variant are invited to the clinic in order to ascertain any risk to their unborn baby. Partners areencouraged to be screened. The couple are offered the option of an appointment allowing us to give further informationon the condition and its implication, to include prenatal diagnosis and parental choice.

In this period, we identified 278 women to have an usual haemoglobinopathy status, of those 78 partners were alsoscreened. However, 174 individuals did not require counselling as either an appointment was not necessary or they hadpreviously received counselling.

Number of women found to have an unusual Haemoglobinopathy

Number of Partners screened

Number of partners previously screened

Number of individuals attended counselling

Previously counselled/no appointment necessary

Number of at risk couples identified

Wolverhampton Walsall

197

43

51

99

142

12

81

35

20

94

32

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Area

10

Wolverhampton

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Newborn ScreeningThrough the neonatal screening programme, all parents are offered the chance to have their newborn babiesscreened for Sickle Cell as part of the routine ‘heel prick’ or ‘blood spot’ test. This test is designed to pick up severalhealth problems including Sickle Cell as early as possible. Those babies thought to have Sickle Cell Disease are referreddirectly to the hospital clinicians with the option of being referred to the Project for ongoing support. Those thoughtto be carriers are contacted by the Project with the option of an appointment allowing us to give further informationon the condition and its implication.

The table outlines all babies identified as having an unusual haemoglobinopathy.

Walsall

91

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Area

Wolverhampton

Number of newbornbabies identified ascarrying an unusualhaemoglobinopathy

Number ofnewborn babiesidentified with a

disorder

Number ofParents

counselled

Number ofadditional

family memberscounselled

Number of Partners screened

as a result ofcounselling

2

1

102

73

32

23

58

32

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Genetic CounsellingAll unusual results via the Antenatal, Newborn or selfprocesses are referred to the Project for the offer of acounselling appointment and the main focus of counsellingis to ensure:

• Individuals at risk of Haemoglobinopathies have fullaccess to information

• Access to one – to – one counselling sessions.• Appropriate and understandable language is used.• Liaison with other professionals on counselling issues are

undertaken.

• Counselling is provided respective of culturalbackgrounds and the ethnic customs of families.

Counselling can be offered on three aspects;• Genetics (diagnosis and risk factors)• Health and Social (effective care and management)• Psychological (coping strategies)

Across Wolverhampton and Walsall a total of 263 individualsreceived counselling via the Antenatal and Neonatalscreening programmes. Counselling is delivered at a numberof venues which include individual’s homes, Antenatal Clinicat New Cross and Manor Hospital and at the Projects officesat St Johns Square.

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Walsall

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Support• Guidance and referrals can be made to relevant agencies regarding Welfare benefits, such as housing, disability living

allowance, social services etc.• Hospital visits: support is provided when children attend the hospital for care and treatment.

“I found you and your service and support really helpful. You helped me while I was in hospital and your organisation has beensupportive to my family. You have helped me more to understand my rights and how to be treated as a patient and what toexpect from staff at the hospital.”

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VisitsThe Project also carries out visits to clients as part of our commitment to support service users in the management of theircondition. Home visits are provided for affected children and their families. During this period the Project carried out 166home visits and a further 104 hospital visits to provide assistance as and when required. A further 12 visits were carried out toschools and 4 visits were arranged at St Johns.

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Enquiries Enquiries are usually made through; telephone calls, visits to the office, letters of correspondence and emails. All enquiriesare recorded in order to assess what requests are being made and also to determine any requirements to makes changes toour services and review the deployment of resources. During the year, the Project received 904 enquiries. All enquiries aretreated in the strictest of confidence and no personal details are passed to any other organisation without the expressedconsent of enquirers. The diagram below demonstrates the type of enquiries received by the Project and who the requestshave been made by.

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Care Plans & AssessmentsAll affected children have assessments carried out; these are done with their parents/carers. All children attendingnurseries and schools have a care plan, which is done with their parents/carer, school staff and other relevant healthprofessionals; these can include their consultant, haemoglobinopathy nurse or counsellor.During this period 53 care plans have been implemented at over 20 schools in Wolverhampton and Walsall.Awareness sessions have also been delivered to some of the teachers involved with the care of affected children.Below is a list of schools which have had care plans have been implemented:

Walsall Schools:• Blue coat- infants school • Whitehall nursery & infants School• Alumwell Junior• Yew Tree Primary – Junior• Kingshill Infants• Bentley West Infants• Hydesville Secondary• Aldridge Secondary• Barr Beacon School• Blue coat- secondary• Sure Start- Chuckery• Aldridge secondary school

Wolverhampton Schools: • Eastfield Primary infants• Dovecotes Infants• West Park nursery & Infants• Oxley Primary• St Stephens Church of England • Trinity Church of England• Woden Primary• Bantock Primary• St Edmunds Secondary• St Peters• St Lukes Primary• St Marys & St Johns Primary school• Graisley Primary school

“My son and I were gettingfrustrated each time hemoved up a year explainingto the teachers about sicklecell. I rang the SCTSP theyhelped to devise a care planand gave useful informationto the school. We now revisethe care plan each year andschool and new teachersreceive information and thebeginning of each new yearof school”.

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Dudley

“The service was really good and very helpful. You helped with paperwork and have always been at the end of the telephone ifI ever need anything. Whenever I need any help or support I know it’s all confidential and know I will get the support I need.”

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Walsall

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Health PromotionAs well as carrying out awareness programmes withincommunity settings the Project has also workedclosely with the Regional Screening Programme andthe Regional NHS Health Care Bus to promotescreening and raise awareness of Sickle Cell andThalassaemia at health promotion events.

The Regional Screening road show which was done inconjunction with the NHS Blood and Transplant Servicestook place across a number of areas which included:

• Walsall City Centre• Merry Hill Centre • Dudley High Street• City Show Wolverhampton

The NHS Health Care Bus travelled across the WestMidlands and beyond to promote Health initiatives, theProject was invited to be part of the team that took partin delivering information to the public about variousHealth issues. As well as taking part in areas covered bythe Project we were also asked to attend in areas notcovered by dedicated Sickle Cell and Thalassaemiaspecialist services.

The areas covered by the Project were:

• Wolverhampton • Walsall• Dudley• Telford• Stafford• Stoke on Trent

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Raising CommunityAwareness Community Awareness is a vital component for theorganisation. Preventative work within thecommunity enhances knowledge and understandingof the conditions and how they can be managed.This year we were part of exhibitions held at variouslocations across Wolverhampton, Walsall and Dudleyincluding:

WolverhamptonCarers Week Event Northycote Farm Town and Country Show Great Brickkiln Seventh Day Adventist Asda Wolverhampton Sickle Cell Charity Fundraiser ACSHAN Martin Luther King Day Wolverhampton City ShowWolverhampton University Health EventWorld Sickle Cell Day

DudleyBME Community Engagement Event Claughton Centre Open Day Black History Month New Testament Welfare Association Dudley Asian Womens Network Dudley African-Caribbean Befriending Service Carers Week at Russells Hall HospitalCommunity Cohesion GroupExpert Patient Engagement Event Big Bash Event

WalsallApna GharAsda- WalsallAsda LivingAsda DarlastonAsda Bloxwich

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TrainingThe Project actively supportshealth professionals withinthe primary care setting, aswell as allied healthprofessionals working in thewider community withregular training programmes.

During this period trainingsessions have been deliveredin both Wolverhampton andWalsall.

WolverhamptonSchool Health Nurses &Nursery Nurse / supportworkers: 45

Health Visitors, Nursery nurses/support workers: 35

Schools in Wolverhampton

WalsallDuring this period theCommunity Counsellor hasdelivered training sessions toover 50 Health Visitors andSupport Workers. A further 30school Nurses have alsoattended training sessions.

Training has also been deliveredto GP reception staff andteachers of children affected bySickle Cell and Thalassaemia.

Following a request made tothe Project the CommunityCounsellor provided training tostaff working at the WalsallWomen’s Refugee Centre, whocome into contact withindividuals who may be sociallyexcluded from accessingappropriate health careservices.

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EducationThe Project works closely with both primaryand secondary schools to raise awarenessof both Sickle Cell and Thalassaemia withstaff and pupils alike. As well as deliveringpresentations out in the community theProject is also involved in deliveringeducational sessions to a number oforganisations, these have included:

Dudley • Castle High • Olive Hill Primary School • Kates Hill Primary School • Kates Hill & Sledmere Children’s Centre • Wrens Nest Primary School • Adcote School for Girls • Rainbow Day Nursery • Thorns Community College • St Johns & St Edmonds Primary School

Wolverhampton • Young Voices • Wolverhampton College • Christ Church Infant School • Smestow School • Re-Entry (Park Village) • Re-Entry (Park Village SEN Group) • Re-Entry (Bilston)

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When the Sickle Cell andThalassaemia Project began over twodecades ago, it was in response tothe obvious inequality in serviceprovision in haemoglobinopathies foraffected communities inWolverhampton, the lack ofknowledge of these groups andinadequate health service provisionavailable to them.

However, as recent changes inbenefits and welfare support haveput additional pressure on thosealready living with these chronicconditions and therefore, thedemand on our service also changes.Due to the increase in requests foroutreach services, the organisationsuccessfully secured a two year grantto deliver much needed community

services for the affected client group. To objective of this service is to forma multidisciplinary team to provide arange of integrated services topromote faster recovery from illness,prevent unnecessary acute hospitaland premature admissions, supportdischarge from hospital andmaximise independent living.

Currently the organisation supportsthe affected client group duringepisodes of hospitalisation; howeverthis is generally in terms of advocacyand social. The launch of this newinitiative will allow us to implement arange of activities which will supportclients more intensely during periodsof hospitalisation and agree apackage of support for discharge andthereafter.

A number of our clients live bythemselves with little or noexternal/family support, therefore ourservice will offer a range ofinterventions so as reduce the feelingof isolation especially during periodsof being unwell, to include alternativemodes of recovery i.e. massage,access to cognitive behaviouraltherapies and psychological support.

The service will be targeted to theaffected client group, which affectsapproximately 102 adults in the threeareas Wolverhampton, Walsall andDudley.

Outreach Project sponsored by Lloyds TSB Foundation

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For World Sickle Cell Day this year we teamed upwith Krispy Kreme Donuts to raise awareness of thecondition and raise money at the same time by sellingKrispy Kreme donuts. Krispy Kreme provided donutsto the Project at a special fund raising price, which wethen sold raising a total of £349.85. All of theproceeds from the day went towards the ProjectsHardship fund.

The event itself was held at City of WolverhamptonCollege and was extremely well received by bothstudents and lecturers alike. It was so well received infact that by 14.00 we had run out of donuts!

We were also lucky enough to be mentioned on theofficial Krispy Kreme twitter feed for our endeavours.The Project would also like to take this opportunity tothank the staff at Krispy Kreme donuts (Bullring Store-Birmingham) and everyone who bought donuts forhelping us raise this money for our Hardship fund.

FundraisingRaising some dough with Krispy Kreme’s

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Case StudyThe case study focuses on a service user who has two children with Beta-Thalassaemia Major. It came to our attentionthat the parent may need some extra emotional support as at the time they were going through bereavement afterlosing their young baby. A visit was conducted with the parent and they asked about bereavement counselling. Aninitial referral had been made to an outside agency but the parent did not feel comfortable speaking with a stranger.

We worked with the parent on a one to one basis, offering regular visits and home support to help the parent tomanage their grief. During this process we also explored other areas where support may be required. The parenthighlighted that they would need some support financially to help towards the cost of the funeral. Through the supportof the Project, an application for financial assistance from the Department of Work and Pensions was submitted. Thetotal cost of the funeral was covered, which took a lot of the financial worry and strain away from the family as a whole,which in turn contributed to the positive and emotional wellbeing of the family.

This family had also identified further needs for financial support to helpimprove the quality of life for the two children with Beta-ThalassaemiaMajor.

A Family Fund application was completed to enable the family topurchase essential items for the affected children, which was alsosuccessful.

“As a result of the Projects support Iwas able to remain independent andnot ask my family for any financialsupport which may have put morestrain on them also. I lost my son and Iwas very depressed at that time.Through the work and support of theProject I was able to go on a holidaywhich helped me both mentally andemotionally”

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Objectives

Discharge Planning

• To reduce hospital length of stay and unplanned re-admission to hospital

• Improve the co-ordination of services followingdischarge from hospital

• Tailored to the individual client leading to an increasein patient satisfaction

Home Support

• Practical assistance to include help with shopping,cleaning, laundry or food preparation

• Facilitate where appropriate help with personal care

Companionship

• Visit• Lifestyle match

Volunteer engagement programme

• New volunteering opportunities• Collaborative work between staff and volunteers in

the provision for home support

“It’s good to know that the service is always there when I need them, especially in times of need e.g. hospitalisation, and thatI don’t feel pressured to be in contact with them constantly. ”

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A full set of accounts have been prepared, and are available from our website (www.sctsp.org.uk) or bycontacting the office on (01902) 444076/77.

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Accounts

The Sickle Cell & Thalassaemia Support Project (Wolverhampton) would like tothank the following individuals and organisations for their continued support:

Organisations Wolverhampton City CouncilWolverhampton City Primary Care TrustDudley Metropolitan Borough CouncilDudley Primary Care Trust NHS Walsall Community Health Walsall Hospital NHS Trust Lloyds TSB Foundations

Donations Andus Home from Home JP Stores Bradmore Wines Fox Hotel Ideal EyesSelect & Save Bruford Arms Castlecroft Stores Warstones NewsSuper Stop Bills National StoresJeremy Watson Bradmore Post Office and NewsHome from Home JP Stores Newhampton Road Post Office UNISON

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Future Developments

3. To continue to measure and promote thequality of new and existing services

2. To develop new markets

1. To grow new business streams

4. To build strategic partnerships within thesector and engage with local and nationaldecision making agencies in relation to thedevelopment of haemoglobinopathies

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Sickle Cell & Thalassaemia Support Project(Wolverhampton)

2nd Floor Office, St. Johns House, St. Johns Square, Wolverhampton, WV2 4BH

Tel: (01902) 444076 / 77Fax: (01902) 445322Email: info@sctsp.org.ukwww.sctsp.org.uk

Charity No. 1077687 Company Reg. No. 3575079

Supported by