General rightsThis document is made available in accordance with publisher policies. Please cite only the published version using the reference above. Full terms of use are available: http://www.bristol.ac.uk/pure/about/ebr-terms The men in the study wanted to be given proactive cues that they could bring up topics such as death and dying and wanted to have these conversations with clinicians who combined expert knowledge about the condition as well as good listening skills. Topics of interest to participants included likely nature and place of death; practical planning for funerals and wills; and sources of information and support. Emotional or psychological support to think about end of life was not routinely offered and participants found it very difficult to discuss these issues with family members. The study suggests that more could be done to encourage clinicians, men with Duchenne, family members and the wider NMD community to pay attention to end of life planning issues and the associated need for emotional support and high quality interactions between patients and clinicians.
In 2003 the New Opportunities Fund (NOF, now known as The Big Lottery) awarded £48 million to 70 home-based care teams to enable them to provide a range of services to allow children with non-malignant life-limiting conditions to be cared for at home. Four grants were made available in Bristol, North Somerset, South Gloucestershire and Bath and North East Somerset to enhance existing children's palliative care services. As there is limited evidence about the impact of palliative care services on psychological well-being, this study measured parental stress and the psychological wellbeing of parents of newly referred children with life-limiting and life-threatening conditions. Measures were administered at the point of referral and at 12 months follow-up. Statistical analysis indicated that there was no significant change at 12 month follow-up. The lack of deterioration in levels of parental stress and psychological wellbeing is viewed positively within this context. It is hypothesised that multi-agency and partnership working was a significant contributory factor in not increasing levels of parental stress and psychological wellbeing through social support.
PRACTICEThe patient presented to his general practitioner nine days after surgery with his right eye completely closed and a mild intermittent headache. On examination he was clinically normovolaemic and had no features of hypopituitarism. He had right sided ptosis and a sluggishly reactive and slightly dilated right pupil. He had normal abduction but moderate restriction of right eye movements in all other directions, consistent with an isolated partial right oculomotor nerve palsy. His visual acuity and visual fields were normal. He was admitted under neurosurgery and a diagnosis of posterior communicating artery aneurysm was considered.He was hyponatraemic, with a sodium value of 128 mmol/L (reference range 136-146), and fluids were immediately restricted to 1 L per 24 hours. Magnetic resonance imaging and magnetic resonance angiography of the head incidentally showed an enlarged pituitary gland, with diffuse high T1 signal consistent with a sub acute pituitary haemorrhage. He showed no evidence of a posterior communicating artery aneurysm. Pituitary magnetic resonance imaging two days later ( fig 1A) showed a bilobed haemorrhagic intrasellar/suprasellar mass measuring 14×13×12 mm, consistent with haemorrhage into a pituitary macroadenoma. The mass extended into the roof of the right cavernous sinus, where it abutted the right oculomotor nerve at its peripheral aspect.Despite fluid restriction, the next day (postoperative day 10) plasma sodium was 129 mmol/L, urine sodium was 55 mmol/L, and urine osmolality was inappropriately high (626 mmol/kg). Plasma cortisol at 9 am was low (51 nmol/L; 250-800), free thyroxine was also low (7 pmol/L; 10-24), and thyroid stimulating hormone was normal (0.49 mIU/L; 0.4-4.0), consistent with secondary hypoadrenalism and hypothyroidism. The cortisol result was not available until a day later (postoperative day 11), and at that stage intravenous (50 mg eight hourly) and later oral hydrocortisone supplementation was started, after which the hyponatraemia promptly resolved (fig 2). He was maintained on oral hydrocortisone (15 mg at 8 am, 5 mg at 3 pm) and daily thyroxine (50 μg).Further pituitary function tests showed luteinising hormone and follicle stimulating hormone values of 0.4 IU/L (2-8) and 1.9 IU/L (2-14), respectively, and total testosterone was also low at 1.1 nmol/L (9-38), confirming secondary hypogonadism. Prolactin and insulin-like growth factor 1 were within normal limits. Two days after the markedly low cortisol measurement, plasma adrenocorticotrophin was normal at 9.2 pmol/L (1-12). During admission his right eye symptoms gradually resolved and he was discharged 14 days after surgery.The initial non-suppressed plasma adrenocorticotrophin concentration raised the possibility of recovery of pituitary function and prompted repeat measurement of morning cortisol and adrenocorticotrophin on postoperative day 20Postsurgical hyponatraemia with ocular palsy suggests hypopituitarism from haemorrhagic infarction of an unsuspected pituitary adenoma Hyponatraemia is the mo...
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