Common Needs

Common Needs in Rare & Complex Urogenital Anorectal Conditions

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Surgical correction is the key for many rare and complex uro-genital-anorectal malformations. However, it is only one aspect, and care needs to go beyond the surgery and be a holistic, life-long approach to optimise childhood development, confidence, and independence.

Diagnosis

  • Accurate and timely diagnosis can be difficult to secure. Can be give during pregnancy, immediately at birth or later in life.
  • Following diagnosis, referral to the right speciality and centre is essential.
  • Parents can be overloaded with information and are faced with many difficult questions.
  • Step-by-step, proactive information given on treatment options is essential including on surgery options and psychological support.
  • Diagnostic information including time of diagnostic examinations should be given to the parents – who to call and what to expect in the first 6 months.
  • Directing parents and family to a patient organisation can be a huge support.
  • In other syndromes that are diagnosis later in life with chronic and degenerative disease (such as interstitial cystitis), women can see many doctors and can be ill-treated before securing the right diagnosis, causing significant distress.

Surgery

  • Corrective surgery – closing of the bladder or correcting the malformation.
  • Information on possibility of reconstruction surgery.
  • Proactive bowel and continence management is essential from day one.
  • Parent education on self-care for the child including skin care.
  • Information and advice on managing the incontinence or soiling, including management of colostomy or catheterisation.
  • Follow up care plan with contact details for support, e.g. specialised nurse and case manager for support.
  • For some conditions, there is no surgical intervention and standard treatments do not take away the problem nor the pain.

Ongoing Treatment

  • After surgery, optimising bladder and bowel management from the word go is essential!
  • For example, following reversal and closure of the stoma that is when problems with the bowels can start.
  • Functional and aesthetic problems need to be proactively managed and individual given long-long support.
  • Treatment should be under an expert centers and by a multi-disciplinary team.
  • Families should be given a ‘road map’ or care plan so they know what to expect and when.
  • Advice on who/speciality to see when needed as an adult/older person when potential further problems may develop.

Communication

  • Good communication and expectation management.
  • Clinicians should use support tools, trigger questions, written information (like individual transition protocols) to aid effective, person-centred communication.
  • Important to have good communication with local services and coordination and timeline for care (including with primary care services and for teachers and schools).

Self-image and emotional well-being

  • All affected individuals want to have a normal life and good expectations on management and life choices.
  • Bladder and bowel disorders touch on the most intimate parts of the body. So much impacts on image…
  • Individuals need to know how to cope with the pain which can trigger depression. Despite ‘flare-ups’ of pain, there are ways to maintain a good quality of life and sex-life.
  • Clinicians should ask trigger questions including about body-image and social and sexual problems.
  • Patient organisations can help parents navigate the challenges in how to talk about the disorder and help it be normalised. Help is being able to phase and ask questions … ‘can I have sex? And how when communicating. This helps confidences of the person.

Life-long Follow Up & Transition

  • Long-term care with future guidance and life stage advice.
  • Bowel management problems and bowel management follow up needed, however needs may change.
  • Care needs to be coordinated and followed up with regular clinical review so issues are identified earlier, in a timely manner.
  • Care needed throughout the whole life of the person. Problems are always there, but silent and can come back to impact on the person’s quality of life.
  • Transition is a process not a ‘one off’ event and should start early working towards the chid becoming more independent in their engagement with health care professionals.
  • Individual transition plans should be developed and put in place .