2014-2015 Sickle Cell & Thalassaemia Support Projectsctsp.org.uk/Content/uploads/files/2014-2015...

Sickle Cell 2014-2015

& Thalassaemia Support Project

INVESTORSIN PEOPLE

947320 ANNUAL REPORTS_Layout 1 10/11/2015 13:40 Page 1

Chairman

Once again, there is need to acknowledge the fact that another year has passed, with our organisation having been in a position to deliver services to those affected by Sickle Cell and Thalassemia. At a time when pressure continues to be placed on public bodies to reduce spending, many voluntary organisations inevitably find themselves targeted. For many, the squeeze is such that their very survival is seriously threatened. Last year, we were given notice that for the first time since our existence, the Local authority would cease funding us from the coming year. And with the squeezes from elsewhere, that is why I am so happy that as an organisation, we have been able to continue not just to survive, but to achieve financial balance and other service

can

from further constraints and whilst this is will no doubt be a factor for the coming years, it is so reassuring that we can rely on a team of committed and dedicated people to ensure continuation of service: I include staff and board members and appreciate their continuing efforts. I am also grateful for the support from others is so many different ways. My thanks to all of you and may this continue as we look ahead to another significant milestone in our existence.

Foreword

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Who can it affect? Sickle Cell and Thalassaemia are more prevalent in people who have originated from Africa, the Caribbean, the

Middle East, Asia and the Mediterranean. However, because of the increasingly diverse society in England, people who carry the gene for Sickle Cell, Thalassaemia and other haemoglobin variants can be found in any ethnic group

Thalassaemia Major (Beta Thalassaemia) is the most common severe form of thalassaemia. It results in the inability of the body to produce haemoglobin in the red blood cells, thereby causing life threatening anaemia. Beta Thalassaemia is thought to affect more than 700 people, with approximately 214,000 carriers in the UK.

Thalassaemia arises from problems in the production of either the alpha or beta chains that make up haemoglobin. This causes inefficient production of normal haemoglobin and the increased breakdown of red blood cells, both causing anaemia.

There are many forms of Thalassaemia, among which Beta-Thalassaemia Major is the most common one to cause long term health issues. Children who are born with Beta Thalassaemia Major cannot make enough haemoglobin in their blood. As a result they become severely anaemic and need blood transfusions every 4/6 weeks. This causes iron overload in the body and to deal with this, some need regular injections for life. But new treatment is now available which is taken by mouth, but the transfusion need is unchanged.

profound psychological effects on the individuals and their families.

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How do you get the Disease? If both parents have Sickle Cell or Thalassaemia trait, there is a one in four chance (25%)

for each pregnancy that the child will have Sickle Cell Disease or Thalassaemia Major.

What is the difference between a carrier (trait) and the disease?

Carriers (Trait)

can pass the condition onto their children, who can be affected by the disease

identify if there is a possible risk to their child.

Disease affected.

-long. Bone marrow transplant is the only known cure and this

is rare. long term medical supervision.

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Services provided by Sickle Cell and Thalassaemia Support Project

SCTSP

Advice & Advocacy

Campaigning

Counselling

Screening

Events & Exhibition

Fundraising Education

Visits

Volunteering programme

Health Promotion

Outreach

Community Development

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

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The NHS Plan (Department of Health 2000) prompted new initiatives to be put into place to modernise antenatal and new-born screening services. This was to ensure that expectant parents can make informed choices about which tests to have. Screening in early pregnancy is an essential component of good quality maternity care and a fundamental entitlement for the mother and her unborn baby. This commitment covers three different screening programs:

Antenatal screening for Thalassaemia Antenatal screening for Sickle Cell

Neonatal screening for Sickle Cell

Screening

During the period of April 2014 to March 2015, we received and processed 318 unusual blood results (these are individuals that have been tested and identified as potentially being affected or carrier of a haemoglobinopathy).

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Area Wolverhampton Walsall

Number of women found to have an unusual Haemoglobinopathy 130 93

Number of Partners screened 51 35

Number of partners previously screened 58 39

Number of individuals attended counselling 108 72

Previously counselled/no appointment necessary 48 41

Number of at risk couples identified 20 21

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

Antenatal Screening

In 2014-21015, we identified 223 women to have an unusual haemoglobinopathy status, of those 86 partners were also screened. However, 89 individuals did not require counselling as either an appointment was not necessary or they had previously received counselling.

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3% 8%

13%

28%

1%3%

23%

16%

5%

Mum Hb StatusHbAC - 2

HbAD - 6

HbAE - 10

HbAS - 21

HbSC - 1

HPFH - 2

Beta Thal - 17

Pos Alpha 0 Thal - 12

Other Variants - 4

19%

12%

16%

16%

4%

21%2% 5% 1% 4%

Mum Ethnicity African - 14

Bangladeshi - 9

Caribbean - 12

Indian - 12

Mixed Race - 3

Pakistani - 16

South European - 1

White British - 4

Vietnamese - 1

Unknown - 3

W Walsall

11%

7%2%

35%5%

18%

18%

4%

Mum Hb StatusHbAC - 14

HbAD - 9

HbAE - 3

HbAS - 44

HPFH - 6

Beta Thal - 23

Pos Alpha 0 Thal - 22

Other Variants - 5

22%

20%

1%2%

21%

3%

9%

9%2% 9% 2%

Mum Ethnicity African - 28

Caribbean - 25

Chinese - 2

Eastern European - 2

Indian - 27

Middle Eastern - 4

Mixed Race - 12

Pakistani - 11

South European - 2

White British - 11

Unknown - 2

Wolverhampton W

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Area

Number of newborn babies identified as carrying

an unusual haemoglobinopathy

Number of Parents

counselled

Number of additional

family members counselled

Number of Partners screened as a result

of counselling

Wolverhampton

77 70

26

27

Walsall

44 55 1 23

Newborn Screening

Through the neonatal screening programme, all parents are offered the chance to have their new born babies

potentially serious health problems including Sickle Cell as early as possible. Those babies thought to have Sickle Cell Disease are referred directly to the hospital clinicians with the option of being referred to the Project for ongoing support. Those thought to be carriers are contacted by the Project with the option of an appointment allowing us to give further information on the condition and its implication.

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


66%

19%

12%3% 1%

Baby Hb StatusHbAS - 50

HbAC - 15

HbAD - 9

HbAE - 2

HbAA - 1

22%

8%

3%

1%34%

32%

Mum Hb Status HbAS - 17

HbAC - 6

HbAD - 2

HbAE - 1

HBAA - 26

No results -25

25%

8%

7%1%36%

3%

1%

19%

Baby Ethnicity

African - 19

Caribbean - 6

Indian - 5

Middle Eastern - 1

Mixed Race - 28

Pakistani - 2

Thai - 1

Not Stated - 15

Wolverhampton

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55%

9%

11%

11%

7%7%

Baby Hb Status

HbAS - 24

HbAC - 4

HbAD - 5

HbAE - 5

HbAA - 3

Beta Thal - 2

45%

2%5%7%2%

30%

9%Mum Hb Status

HbAS - 20

HbAC - 1

HbAD - 2

HbAE - 3

Beta Thal - 1

HbAA - 13

No Details - 4

23%

20%

9%14%

32%

2%

Baby Ethnicity

African- 10

Caribbean - 9

Indian - 4

Bangladeshi - 6

Mixed Race - 14

Not Stated - 1

Walsall

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Genetic counselling

All unusual results via the Antenatal, New born screening programme or those self-referring are forwarded to the Project for the offer of a counselling appointment. The main focus of counselling is:

Individuals at risk of Haemoglobinopathies have full access 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 cultural backgrounds and the ethnic customs of families.

Across Wolverhampton and Walsall a total of 332 individuals received counselling via the Antenatal and Neonatal screening programmes, an increase on the previous year. Counselling is delivered at a number of venues which include

al Clinics at New Cross and Manor Hospitals and at the Project s offices at St Johns Square.

Counselling can be offered on three aspects;

Genetics (diagnosis and risk factors) Health and Social (effective care and management) Psychological (coping strategies)

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The Project also carries out visits to clients as part of our commitment to support service users in the management of their condition. Home visits are provided for affected children and their families. During this period the Project carried out 234 home visits and a further 167 hospital visits to provide assistance as and when required. A further 115 visits were carried out to schools and 40 visits were arranged at the Projects office.

Visits

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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.

organisation has been supportive to my family. You have helped me more to understand my rights and how to

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Care plans & Assessments

All affected children have assessments carried out; these are done with their parents/carers. All children attending nurseries and schools have a care plan, which is done with their parents/carer, school staff and other relevant health professionals; these can include their consultant, haemoglobinopathy nurse or counsellor. During this period 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

Walsall 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 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 Marys & St Johns Primary

school Graisley Primary school

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Advice13%

Advisory Session1%

Basic Information7%

Client Details7%

Confirm Appt1%

Counselling5%

Educational4%

Exhibition / Meeting2%

Financial8%Help with Projects

3%

Home Visit7%

Hospital Visit6%

Info Resources6%

Medical14%

Other1%

Presentation1%

Screening4%

Social8%

Outreach4%

Enquiries are usually made through; telephone calls, visits to the office, letters of correspondence and emails. All enquiries are recorded in order to assess what requests are being made and also to determine any requirements to makes changes to our services and review the deployment of resources. During the year, the Project received 897 enquiries. All enquiries are treated in the strictest of confidence and no personal details are passed to any other organisation without the expressed consent of enquirers. The diagram below demonstrates the type of enquiries received by the Project across the 3 areas we work in.

Enquiries

Wolverhampton

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Advice13% Advisory Session

2%

Basic Information2%Client Details

6%Confirm Appt

1%

Counselling9%

Educational4%


Financial10%Help with Projects

1%

Home Visit11%

Hospital Visit1%

Info Resources4%

Medical15%

Other1%

Presentation3%

Screening3%

Social10%

Outreach3%

Walsall

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Advice11%

Basic Information24%

Counselling2%

Educational12%


Financial6% Help with Projects

2%Home Visit

7%Info Resources

2%Medical

5%

Presentation8%

Questionnaire1%

Screening1%

Social2%

Outreach2%

Dudley

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Raising community Awareness & Health Promotion

Community Awareness is a vital component for the organisation. Preventative work within the community enhances awareness, knowledge and understanding of the conditions and how they can be managed. This year we were part of exhibitions held at various locations across Wolverhampton, Walsall and Dudley.

Northycote Farm Town and Country Show ACSHAN Wolverhampton University Health Event World Sickle Cell Day Wolverhampton College Beacon Centre for the Blind

Black history month various locations. Bentley Health Centre Willenhall Gudwara Walsall Gudwara

New Testament Welfare Association Dudley Asian Womens Network Carers Week at Russells Hall Hospital Adult Social Care Network Community Cohesion Group Expert Patient Engagement Event Dudley College Event BME Consultation

Wolverhampton

Walsall

Dudley

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Education

The Project actively supports health professionals within the primary care setting, as well as allied health professionals working in the wider community with regular training programmes. During this period training sessions have been delivered in both Wolverhampton and Walsall.

School Health Nurses & Nursery Nurse/ support workers: Health Visitors, Nursery nurses/support workers: Schools in Wolverhampton Quarterly Quarterly sessions delivered to midwives and nurses. Training session for CHU staff.

During this period the Community Counsellor has delivered training sessions to Health Visitors and Support Workers. School Nurses have also attended training sessions. Weekly sessions to student midwives and qualified midwives. As well as monthly training sessions with members of the nursing staff at Manor Hospital.

The Project has delivered a training sessions to teachers, nursery nurses and support workers.

Wolverhampton

Walsall

Dudley

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A number of our clients live by themselves with little or no external/family support, therefore our service has offered a range of interventions so as reduce the feeling of isolation especially during periods of being unwell, to include alternative modes of recovery i.e. massage, access to cognitive behavioural therapies and psychological support.

Outreach support

Collaborative work between staff and volunteers in the provision for home support

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Outreach Visits

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0

50

100

150

200

250

300

350

400

Support Requested

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.

has been supportive to my family. You have helped me more to understand my rights and how to be treated as a

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The Children in Need awarded the organisation with a grant to support our younger affected clients to manage their condition better through bouts of sickness, deal with social variations in their personal life and during school and living with a long term condition. Children were invited and attended a number of events and workshops to encourage self-belief, build confidence and motivation and learn skills to manage periods of feeling unwell and low periods and gave them the opportunity to speak out. Everyone that attended welcomed and enjoyed the events and would like to continue to engage with the organisation in planning other outings and events. A big thank you to Children in Need for supporting our young people.

Children in Need

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Awards for All awarded the organisation with a grant to deliver some much needed support for affected clients, this initiative supported many of our clients who have been affected by the recent welfare

reforms and the main aim of the programme was to improve educational attainment, facilitate retraining, upskilling and encourage

entrepreneurial activity including setting up a business and self-employment. These activities lead to clients becoming more self-

sufficient and financially empowered.

Overall the clients felt more economically active and reduced their dependency on welfare benefits and make a more positive contribution

to their family and local community.

The project evaluated very well and we would like to thank Big Lottery Fund for their invaluable contribution.

Awards for all

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“The support is there whenever I contact the Project and request any help. I would not be receiving all the benefits I am entitled to without the help of the Project. They are always there on the other end of the phone. I really appreciate the Project coming to visit me at home and in hospital when I am admitted.

Feedback

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0.29%

0.31%0.27%

85.76%

13.37%

Income

Donations

Fundraising

Investment Income

Grants

Trusts & Foundations

Accounts

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75%

3%

9%

1%

1%11%

Expenditure

Salaries & on costs

IT Development & Maintenance

Rent and service charge

Insurance

Accounting and professional fees

Oveheads

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Wolverhampton City Council Wolverhampton Clinical Commissioning Group Dudley Metropolitan Borough Council Dudley Clinical Commissioning Group Walsall Healthcare Trust Lloyds TSB Foundation Awards for All Children in Need

Andus Home from Home Bills National Stores Ideal Eyes Bradmore Arms M Marenga Bradmore Post Office and News Mount Tavern Bradmore Wines Newhampton Road Post Office Bruford Arms Select & Save Caribbean Golf Society Sue Patel Castlecroft Stores Super Stop Everything Cris Warstones News

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

Donations

Organisations

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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 / 77

Fax: (01902) 445322 Email: [email protected]

www.sctsp.org.uk Charity No. 1077687 Company Reg. No. 3575079

Supported by

Company Reg. No. 3575079


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