Support from Professionals
There are many local and national organisations that can offer information and support to parents and carers. Some cater for specific disability groups; others are for anyone who may be caring for a child with special needs.
General support
The IRIS Magazine and website gives advice and support to parent carers about any issues that affect them. Sign up for our monthly e-newsletters.
Other important local sources of information and advice for parent and carers are Disability Nottinghamshire, The Carers Federation, Parent/Carers Forum and the county council's Information For Families service and the Nottingham City Families Information Service.
Contact a Family is a national charity which offers help for parents of disabled children. They produce information sheets on a variety of topics, a quarterly magazine and a directory with information about specific conditions.
Sometimes you may need more specific support:
Bereavement support
Some parents may live for years with the knowledge that one day their child will die. Some of you may have already lived through that.
When a child dies or is terminally ill, it is a desperately sad and sensitive time for parents, siblings, other family members and close friends. Other people don't know what to say and, being afraid of saying the wrong thing, they often say nothing at all. Those of us who have lost a child, however, often want to talk about him or her - we long for people to mention their name and share memories and stories. Frequently our lives have been very closely involved with our child's physical and medical care and suddenly this has all stopped. There's a huge gap. Some of us found it invaluable to talk with other parents who had had the same experience, or just someone who could understand our feelings.
Hospices
Children who are terminally ill and need nursing care or have complex physical and medical needs, may spend time in a hospice, an environment in which most children can feel safe and where the care is specialist. Hospices are bright sunny places. Parents often find the support offered is invaluable. There is only one children's hospice in the East Midlands region that is used by local children and their families, called Rainbows based in Leicestershire and Bluebell Woods in Sheffield further details are below:
Rainbows
Lark Rise, Loughborough, LE11 2HS
Telephone 01509 638000 Minicom 01509 216472
Website www.rainbows.co.uk
For children suffering from life limiting conditions who are not expected to live to adulthood, but also offers care for those living up to age 30. Covers the midland counties including Nottinghamshire. Respite, palliative and end of life care. Support and activities for brothers and sisters, including a Siblings Group, and bereavement support.
Bluebell Wood Children’s Hospice
Cramfit Road, NorthAnston, Sheffield, South Yorkshire S25 4AJ
Telephone 01909 517369 (care enquiries)
0845 108 1579 (other enquiries)
Website www.bluebellwood.org
The hospice has 8 beds. A small community team can work with a few children with life limiting conditions and their families at home. Referrals accepted from anyone, provided they are made with the knowledge and agreement of the family. Services for families in North Nottinghamshire, North Lincolnshire (west of the Trent), North East Derbyshire and South Yorkshire. Referrals can be made to Head of Care, Bluebell Wood Children’s Hospice. Phone for referral forms or download them from the website.
Professional support services for bereavement
For parents in this situation, there are a number of sources of support that may prove useful. The Child Bereavement Charity (CBC) runs a confidential support and information line that gives help and guidance to bereaved families. Their website also offers lots of literature and resources and an online forum that enables parent to share their experiences. For parents who have lost a child, the Child Death helpline, run by bereaved parents from Great Ormond Street Hospital, provides home visits, a befriending service and a booklist. The Compassionate Friends and CRUSE support both bereaved parents and other family members, and may have local contacts and self-help groups.
There are also local counselling services that provide support especially for family members of disabled children, young people and adults, which we have listed in the Counselling section further down this page.
Practicalities
As if coping with grief itself wasn't enough, there are funeral arrangements to sort out as well. Funeral directors don't charge for their services for babies' and children's funerals, and a number of them provide extra support for families who have lost a child. You may also want to create a 'memory box' containing perhaps a lock of hair, first teeth, photographs, a handprint or your child's special toy. It may also help to get your child's friends and siblings together to celebrate his or her life.
Counselling
If you think you'd benefit from a place where you could talk openly with one person about how having a child with special needs is affecting you, you could think about counselling. There are various kinds of services available in this area. Help may be short or longer term, it may be free or involve payment.
Some of us have used a trained counsellor when our child was first diagnosed and later, but we had to ask for it - counselling isn't offered routinely.
Centre Place
Abbey StreetCommunity Centre, Abbey Street, Worksop S80 2LA
Telephone 01909 479191
Email info@centreplace.org.uk
Website www.centreplace.org.uk
Talkzone is a free confidential one to one counselling service, working with young people aged 16–25 in Bassetlaw.
BASE 51
Glasshouse Street, Nottingham NG1 3LP
Telephone 0115 9525040
Email info@base51.org.uk
Website www.base51.org.uk
Range of services for young people aged 12–25 years including drop in counselling sessions Monday 2–4pm, Thursday 4–6pm, medical services, support for homeless young people, learning support scheme. Basic skills sessions on Fridays. Service will be moving in 2011.
CASY
The Barn, CASY Your Space, Smith Street, Balderton, Newark NG24 3BA
Telephone 07968 517026
Website www.casy.org.uk
Registered charity (number 1092938) provides confidential counselling for young people aged 9–25 years in Bassetlaw and Newark and Sherwood areas both within schools and in a variety of other settings depending on where the young person feels safe. Counsellors can help young people facing bereavement, family break-up, family illness, exclusion from school etc. Young people or their parents can self refer. Free to young people up to 19 years, 19–25 year olds may be asked for a contribution if they are working. Training for teaching staff is also available.
Counselling and Mediation Team
Based at King’s Mill and Newark Hospitals
Telephone 01623 657077
For young people aged 10–25 in any area of the county outside the city. Free counselling which could cover a range of issues including bereavement, sexual issues, depression, anger etc. Will refer to another service if more appropriate. Can also counsel young people with learning or physical disabilities, siblings of children with disabilities. Anyone can refer. Young people are assessed on referral to ensure they have the capacity to consent or that parent/carer can give consent. Young people can be seen in schools if preferred. Mediation can be provided in schools between teachers and pupils, or between parents and school.
Speakeasy Counselling Service
Connexions Centre, 24-32 Carlton Street, Hockley, Nottingham NG11NN
Telephone 0115 9926102
Counselling for young people aged 13–25 years living in Nottingham and surrounding area. Covers range of difficulties eg. Bullying, stress, eating disorders, relationship problems, self harm, dealing with anger or grief.
WAM (What About Me)
Telephone 01623 635326 (9am–7pm daily)
Text 07970 724165
Email wam.team@nottscommunityhealth.nhs.uk
Website www.what-about-me.co.uk
Support for children aged 5–19 affected by someone else’s substance (drug/alcohol) use. Confidential service. Anyone can refer. Telephone support or face to face sessions.
Relationship counselling
Sadly, having a child with special needs may lead to much unhappiness between parents, and even the breakdown of their relationship. Sometimes it's because it's so hard to spend time together away from the children; maybe one partner has to devote so much energy to dealing with appointments, therapies and so on that the other partner feels left out, or chooses to stay uninformed of what's going on, for example. If you're beginning to see warning signs that it's happening to you, organisations like RELATE can offer support and a place to let off steam.
The flipside of that is that some parents find that having a child with special needs brings them closer together as a couple.
Nottinghamshire Womens Aid Ltd and Nottingham’s Women’s Aid Integration Services provides specialist support services for women, children and young people living with the effects of domestic abuse. Their Break for Change group is for parents and young people where the young person is being abusive towards the parent.
Relate - Way Ahead Scheme
Counselling is available in Nottingham, Mansfield, Newark, Worksop or Retford. To arrange an initial appointment please telephone either the Nottingham office on 0115 9507836 Please refer to the 'Way Ahead Scheme' when ringing. Please note this service is available to Notts County residents only.
Download the Way Ahead Scheme flyer for more details.
Family work
Most of us have found that having a child with special needs creates stresses and strains within the whole family. Sometimes getting help which focuses on the needs of everyone in the family can be helpful.
Your family could be referred to the Child and Adolescent Mental Health Service (CAMHS) to see if you could get family therapy. Families are usually referred to CAMHS by a professional such as a GP or social worker but you can refer yourself. There are also Family Support teams in each localilty county and the city. Again you would usually be referred to them via your child's school, your GP or another professional but you can also contact your local Duty and Family Support Team direct.
Children's Centres
If you have a child who is under 5, many of the services you will need to access are located in your local Children's Centre. These include health visitors, advice on child development, support for additional needs, speech and language therapists, family support, early education and childcare. There are 59 Children’s Centres across Nottinghamshire and16 in Nottingham
Click this link for a list of Nottingham Children Centres
Click this link for a list of Nottinghamshire Children Centres or contact the Families Information Centre on 0800 781 2168, or if calling from a mobile 01623 520 694 (standard mobile rates apply).
Email: fis@nottscc.gov.uk
Help with health issues
Sometimes the help you are giving your child may cause you physical pain, particularly if you are having to do a lot of heavy lifting. Social Service’s Occupational Therapists will help arrange for you to receive specialist lifting equipment and train you to use it. The Red Cross also offer therapeutic massages for people going through a stressful time, you can contact them on 0115 852 8018.
You can find contact details for all the organisations mentioned here in Useful contacts.
Sleeping, Feeding and Toilet Training
Contact a Family produce three useful fact sheets about feeding, sleeping and toilet training:
http://www.cafamily.org.uk/paptSleeping.pdf (0.1Mb)
http://www.cafamily.org.uk/paptFeeding.pdf (0.1Mb)
http://www.cafamily.org.uk/paptToilet.pdf (0.1Mb)
Children’s Continence Clinics in Rushcliffe
Contact Jo Blanchard, School Nurse 0115 9893241 (Cotgrave Health Centre).
There are clinics at Cotgrave Health Centre 1st and 3rd Monday of the month and at West Bridgford Health Centre 2nd and 4th Wednesdays of the month. Anyone can refer, but you do need to make an appointment and children must have a Rushcliffe GP or attend a Rushcliffe School. The service covers night-time wetting, daytime wetting, constipation, soiling and toilet training in difficult cases. For children aged 3-18 years although there is some flexibility. Children with special needs may be seen from age 2 and a half. The service can work with health visitors with preschool children and special school nurses with children with special education needs on an individual basis.
Continence Advisory Service
Ashfield Community Hospital, Portland Street, Kirkby in Ashfield, Nottinghamshire, NG17 7AE
Telephone 01623 784785 (Fiona Saunders)
Contact your health visitor/school nurse in the first instance as explained above.
Families can contact direct if necessary. This service works closely with the health visitors/nurses and the Children’s Learning Disability Team at King’s Mill. Covers Mansfield, Ashfield, Newark and Sherwood. Day and night time wetting, constipation and soiling. Work with children of any age.
Continence Advice (Bassetlaw)
Normally parents would speak to their GP, health visitor or school nurse for advice and can then be referred for more specialist help if necessary but parents can contact the continence advisors via the single point of access on 01777 274422. The advisors can also provide specialist advice on continence to health visitors/school nurses working with a child with special needs.
Continence Advisory Service
Ropewalk House, 113 The Ropewalk, Nottingham NG1 6HA
Telephone 0115 9485511
The continence service works closely with school nurses to provide advice and training. If your child has special needs and you live in the city or have a city GP or attend a school in the city you can contact the service direct for advice. In some cases the advisor may see children personally. The advisor cannot see children outside the city. The advisor can give advice on products to families in the city or in Gedling, Broxtoweor Rushcliffe. If you receive nappies or continence pads you will be sent a callback number with the delivery which explains where to phone for further supplies. However if you have any problems with deliveries or have lost the number to call for more you can contact the Home Delivery Coordinator (Amanda Wheldon) on 0115 9485534. If you need a change of size or a different product contact the person who originally assessed your child for continence needs (Health Visitor or School Nurse).
HELP with your rights
The Council for Disabled children produce useful fact sheets about your rights and responsibilities and your child's right to be included which are available at the following web link:
http://www.ncb.org.uk/cdc/other_work/my_rights_your_responsibility1.aspx